Thursday, September 30, 2010

Losing Friends

During our three week saga in the NICU, I received some amazing acts of Charity. There was a friend who sent a packed cooler of food to the hospital which sustained Jon and I for an entire week. There was the husband of someone I once picked strawberries with, who kept us company during the long wait during Tess' first surgery. There was the new blog reader who wrote "Have a Rosary, Will Travel" and kept us company during the second heart surgery.

I read every comment on this blog. I treasured every prayer. There were two long-time blog readers who sent kind notes (with checks) which I received with perfect timing on some of my darkest days.

Those acts of charity shone like stars in the sky.

And that was really critical . . .

because I lost a lot of friends through my daughter's trip to the NICU.

My husband, Jon, calls having a kid in the NICU as "the gold standard of parental need." For one of the first times in my life, I truly needed help. I had four kids under the age of 8. I had a husband who couldn't get more time off his work. I'm a transplant to this city- I have no long-time friends or family nearby.

I asked for help.

And I got turned down. I got turned down by neighbors. I got turned down by family members. I got turned down by Catholics--Daily Mass going Catholics, Bible-School Teaching Catholics and fellow Carmelites.

When I say turned down, I mean turned down flat. Not "this is a bad time, can I do something for you tomorrow." But "No, I can't!" and the empty ringing of a dial tone.

And that hurt, so much, so much.

I spent so much time crying on the way home from the NICU for this reason. My pleas for help got bumped for book club meetings, soccer practice, family get-togethers, home-school lessons, etc.

The "I can't help you now because I've got Adoration tonight" really, really made cry. My husband told me "Sick Baby Tess is Jesus right now on the Cross. Is it possible to miss seeing Jesus in the flesh because of a previous commitment to see Him in the Monstrance?"

I've nicknamed that little crisis "Missing God due to a previously scheduled God appointment." (Lord, please keep me far, far from repeating that same mistake during my future as a Third Order Carmelite.)

I've survived the asking for help and getting turned down. I've discovered that "hope and fear" expectations in specific people are worthless. God will provide help when you need it. Some help will come from surprising sources. Some help will not come from expected sources. All true acts of charity are gifts from God and will make my own heart cry with gratefulness.

Now that I'm out of crisis mode and back in real life, I'm struggling with meekness and forgiveness. (Oh, St. Jerome, pray for me!) The friends that turned me down, are now back. It's really, really hard to hear some of the excuses.

I guess the thing I ran head first into, is the great American sin of "busyness." Everyone means well, of course. But everyone is so busy. Acts of charity that are immediate, that come from a true emergency--like a newborns immediate need for open heart surgery- things that can't be scheduled neatly into a Daily Planner- those are the things that can't get done.

And the irony that made me want to pull out my hair in frustration last week is "why are we doing these things as Catholics?"

What good is home-schooling our children in the Catholic faith, if we can't miss one day of pre-planned lessons to help babysit some older siblings of an extremely sick child?

What good is attending a Pro-Life Committee meeting if on the exact same night a family in our parish whose child struggles with a life-threatening disability has no one to say a rosary over their sick baby's crib in the NICU?

There's a sickness of "busyness" among Catholics that is extremely dangerous because we crowd out God with our previously scheduled God appointments.

I pray hard that I don't commit this sin anymore. Because it sucks to miss out on the real God moments for previously scheduled church activities.

And I need help forgiving people who poke me on Facebook today to say "sorry I couldn't help you last Thursday, but I had a full day"---- when my own "full day" on Thursday required attending to my 22 day old newborn who suddenly had an 18 inch piece of plastic tubing sucked into her heart.

It's a hard thing to be a Catholic! But I just got a double miracle with my newborn daughter, so the least I can do is pray harder to acquire the gift of His Most Merciful Heart.

St. Teresa of Avila, pray for us. St. Jerome pray for us.

Wednesday, September 29, 2010

St. Raphael

I want to give a shout out to my buddy, St. Raphael who healed Baby Tess. If anyone in your family is suffering from sickness, or spiritual blindness, I highly recommend reading Tobit and saying some prayers to our Archangel helpmate.

St. Raphael, pray for us.

Tess Baby Book

Click here to view this photo book larger

Homecoming Hiccups

Baby Tess is doing great. In fact, she's a regular chow-hound. Now that she's off the strict NICU feeding schedule, she's drinking 2-3 ounces of milk every 90 minutes. After a month in the NICU, I can't get her interested in regular breastfeeding yet. Baby Tess will do some nibbling but when she's really hungry, she wants the good stuff (my breastmilk) straight from the bottle. I'm having trouble keeping ahead of her in pumping and feeding.

Anyone have any encouraging stories of "difficult moments in breastfeeding that were overcome" to share?

Monday, September 27, 2010

It Feels Like Christmas

Life feels totally different.

Today I took Baby Tess into a follow up appointment with her regular pediatrician. This is the doctor who called me at home three hours after her formal work day ended to urge me to take my listless, non-eating baby immediately to the ER. Three weeks later we're both laughing that Tessie's six page hospital discharge summary can end with the simple instructions "refer for a hearing screening at one year and take Vitamin D drops."

It is unbelievable to get a newborn back after 2 life-saving surgeries with those simple instructions. I wish all parents could end their long NICU vigils with such healthy babies.

I ran into a funny friend at the baby's first Mass yesterday. She mentioned my "troubles" and kept dropping her voice in a conspiratorial whisper outside of church. I kept correcting her embarrassed, shameful tone by waving my healthy pink baby in front of her face. "Yes, all of that sickness was very scary- but you're missing the point. She's healed! Baby Tess is totally fine! God worked some miracles and we are all so thankful. Today's the day of great happiness and rejoicing."

I've gotten some of the "you guys should never have had to deal with all of that." I think that's all baloney. God is going to hand out some sick kids to the world. Some of them are going to fall into the laps of his beloved, faithful Catholics. In fact, considering that we're ones having the most kids and shunning the whole ugly "lets kill the sick and the lame inside the Mother's womb" rather than risk breaking our hearts inside the Cardiac Catheterization Waiting Room--it's going to look like the faithful Catholics get more sick kids than the rest of the secular world.

Who is better equipped to handle a long vigil in the NICU than two Carmelites in love?

In fact, now that the scary journey is all over, I'm borrowing one of my friend Kaitlyn's phrases "that's all I had to do?" A c-section, some tears in the NICU, one scary hour waiting for my baby's heart to get cleared of a "foreign obstruction"? That's all I had to do to bring home a beloved third daughter who smiles so clearly at only 4 weeks old?

The double trial purified all of us. I was just slipping back into normal reality when the heart crisis hit. My job was to babysit 4 kids under the age of 8 in a small hospital room for 9 hours on Wednesday. It didn't go smoothly. I got stressed handing out butterscotch pudding cups and lollipops and trying to find the right Sponge Bob episodes in the hospital's impossible to use DVD player while trying to feed a newborn who remained inept at nursing.

I called my husband at 6 AM on Thursday morning and dreaded a repeat performance of the Benjamin kids in the hospital drama for 36 more hours.

Then he told me that a foreign object was now lodged in my daughter's heart, and no one was sure how to fix it.

That second time back on the cross cleared everything else out. I didn't complain about my tired eyes or my messy house or the fridge that only contained rotten milk and granola bars.

I knew my baby's NICU journey was going to end when God wanted it to end.

Baby Tess' "happy ending" was solely in God's hands. She was either coming home or not. (I knew God well enough to know that his "happy ending" might be taking a sweet girl up to heaven at 25 days old and leaving her family the grace to cope with missing her.)

I know now that each of my kids is a gift from heaven. I get to be their babysitter on earth. My pride and my stress got all burned away. Now, I'm just left with the joy and the honor of being a regular Mom again.

I realize now that being a Catholic is hard. It does involve suffering. Everyday I wake up and I know that I'm going to be spending some time in the "Heart Catheterization Lab Waiting Room." It's a place I don't want to be, doing something that I don't want to be doing. Jesus sends me there as his friend -- because it's good for healing my own damaged heart.

Once you accept the mandatory suffering part, life as a stay-at-home Catholic wife and mother is pretty good. It's not boring. It's not mundane. It's not unimportant.

Right now, it feels like Christmas in the Benjamin house.

Sunday, September 26, 2010

Our Tess


Born August 30, 2010
22 day hospital stay
Home for keeps September 25, 2010
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Our Lady of Mount Carmel

Pray for us!

Saying Thank You

Our first stop was to say thank you for our double miracle girl to Our Lady of Mount Carmel.

Clicked into her Car Seat

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The Benjamins Have Left the Building

Leaving the NICU on Saturday to head for home!

Ready to Leave NICU- Round 1

Here's my girl who is fully recovered from surgery number uno and ready to transfer to a local hospital to finish her medicine. We didn't count on a return tour to Children's Hospital.

Getting Better Tess


Baby girl started to perk up once we got her some food to eat. This picture was taken during her first sibling visit with Hannah in the NICU.

Sick Tess Day 16 of 22 in NICU


A kind nurse decorated her ugly "unicorn" IV in the middle of her head. Tess managed to break about 55 IVs during her 22 day stay.

Saturday, September 25, 2010

We're Home!

This time to stay! (hopefully) Pictures to come soon.

Friday, September 24, 2010

IT'S OUT!

It's out. Can't wait to post a picture of the scary 18 inch plastic tube that a doctor just removed from my daughter's heart. But it is out. No complications. My job is to hold Baby Tess for the next 4 hours and keep her from kicking off the pressure dressing on her leg. After a night of monintoring, we allegedly can walk out the doors first thing on Saturday morning. Can't wait to take this 25 day old kid to her first Mass at my parish church.

THANKS FOR BEING A PRAYER WARRIOR FOR BABY TESS!

Thursday, September 23, 2010

Quick Update

Tessie's heart "procedure" is scheduled for sometime between 11 AM and 1 PM tomorrow. Jon met the heart surgeon. Our medical care is totally amazing. It's hard to believe that there is an expert on staff who does this specialized heart surgery for newborns everyday. Because my baby is full term and 8 pounds, he told my husband "no problem." The doctors are used to doing this same technique for premies who weigh less than two pounds.

Tomorrow they will be using this special thing called a "lasso" to remove the plastic tube in my baby bunny's heart.

As for my calmness, it's all Jesus baby! I had a scary hour long Metro ride from my house to Children's Hospital. The doctors at our local hospital had never seen this before and they were very scared. I really worried that the obstruction would stop my baby's heart from beating immediately.

All the way down on the Metro, I clung onto my cellphone (which was my connection to my husband) and my rosary (which was my connection to my Blessed Mother.) I took out my favorite picture of Jesus from my Carmelite friend's Ordination last year. With that help, I got to the hospital in one piece, a full 5 hours after I first heard of the bad news.

Since then, it's been nothing but encouraging news.

Send me your prayer intentions please!!!!! Jon, me and Baby Tess will all be hanging on the cross for a few hours on Friday. Glad to know that we'll be in a great position to barter for favors from God for all you!

Tess Heart Problem Update

Well, Children's Hospital in D.C. is the place to be when your kid has wild and crazy surgery complications. I just finished talking to one of my baby's doctors.

Right now, my baby has a 30 centimeter piece of plastic tubing inside her heart. This is a rare complication of having a special kind of IV called a "PIC line." None of the doctors at the NICU have seen this before, but the heart doctors who will do the surgery say this does happen and they know how to fix it.

There is the "easy" way to remove the plastic tubing and a "hard" way. Easy would be to put my kid in some type of real time x-ray, have a specially trained heart doctor go up a vein in her leg and pull out the tube. Hard way is to do open heart surgery.

The heart doctors say that a) its good the tube is so long, because it's easier to remove a big piece rather than a small piece and b) Tessie's heart beat is still totally normal. (one of the worries is that she'd develop a heart problem, but that hasn't happened.)

They scheduled her procedure for first thing tomorrow morning, unless they can get it into the room later this afternoon.

In this exact moment, I'm feeling pretty calm. (Go Carmel!) It's really wonderful to be here with my husband. We keep reminding ourselves that God gave us the grace to get through this trial in one piece on our wedding day. Though Jon did say "If this is year nine, what does God have in store for us at year 39?"

Many, many thanks for all of your prayers and kind comments. You all keep me going!

(Susan -I almost called you for a ride this morning. Must have been a Mary thing!)

Prayers Needed!

Life is a bit crazy right now.

Baby Tess clearly failed to read her discharge plan. (God also must have a larger plan in mind for the Benjamin family this week).

At 3 AM this morning, my husband woke up in our local hospital to realize that our baby's IV line was broken. A piece of plastic about 18 inches long is now lodged inside my baby's heart.

That news freaked out the doctors in the regular hospital, but now that we are at Children's Hospital--this problem seems to be a bit more 'fixable.'

So I'm back in the NICU at Children's Hospital. I've got a super hungry baby girl whose heart rhythms seem to be fine for the moment. They will schedule some kind of surgery today or tomorrow to remove the IV piece from her heart.

Please pray for Baby Tess and her family.

St. Teresa of Avila, pray for us.

Urgent prayer request - baby Tess had a complication

Jen F. here. I just got a voicemail from Abby saying that baby Tess had a complication and will require emergency heart surgery. Please storm heaven with prayers that she makes it through okay, and that Abby and Jon have the grace to stay strong through yet another trial.

Wednesday, September 22, 2010

Thank you!

Thanks for all of your prayers. I'm so tired, prayer is the only thing that is keeping me upright right now!

Right now, things are going great for the baby. She had another great night. Hopefully, she'll be able to come home on Friday morning.

Tuesday, September 21, 2010

Almost Home

Hello, this is Jon, Abby's husband, filling in tonight. Tess was transported by ambulance to Holy Cross Hospital Pediatrics. All six of us were together for the first time in 3 weeks. The good news is she might come home as early as Friday! Although, you never can tell with hospitals. Abby is spending the night with Tess tonight and I am home with the other kids. Tomorrow should be interesting.

Monday, September 20, 2010

Moving Baby Tess

Baby Tess had another amazing day! I just finished breast feeding her for the first time since her surgery. She's super alert and social. The nurses were shocked that she already knows how to smile.

Tonight is our last night in the NICU. Tomorrow she is getting transfered back to the hospital where she was born. She'll be on a regular pediatric floor. Hopefully, Baby Tess is now on "cruise control." Her only reason to still be in the hospital is for her to finish the antibiotic treatment for her blood infection. She should be ready to come home on September 28th.

The new hospital is much closer to home. They allow siblings to visit anytime. Unlike the NICU, you can watch TV, make telephone calls and eat inside the patients room. A parent is also allowed to spend the night. I'm looking forward to a much easier hospital stay for another week.

Many thanks for your prayers for Tess and me. I had a mericful intervention by Jesus this afternoon which kept me out of trouble.

More Prayers Please

Baby Tess is doing great! Me, the Mama, not so well.

Tess went from drinking 5 mL of milk to 55-70 mL each feeding. She's stooling up a storm. She's now a totally normal, happy, alert newborn who is getting life-saving drugs through an IV in her leg.

Tess has improved so much that they are moving her out of the NICU and into a less intensive hospital setting for the next nine days. I'm waiting on my insurance company to approve her transfer. She could be moved to one of four different hospitals tonight.

I'm a little tense today waiting for my baby's next assignment and I'm falling into the sin easily. Please pray for me!

Sunday, September 19, 2010

The Best News

She pooped! At 12:45 AM the nurse reported the "poop of all poops" came out of little Tess. Praise God, my baby is on her way home from the NICU!

To add shivers down your spine, today is the 1 year anniversary of my Father-in-law's death. (To new blog readers, last year on this exact date my husband lost his father less than 12 weeks after his first cancer diagnosis. We've waited for this conclusive sign of Tessie's healing from abdominal surgery for over 12 days now. Thanks Dad!)

Saturday, September 18, 2010

Hurrah!

Wow, what a difference one day on real food can make.

Together, Jon and I spent 7 hours with Baby Tess today. The doctors put her status up to "on demand" for feedings. She gets as much breast milk as she wants, anytime that she wants. I slammed milk down that hungry baby all day. She's up to drinking 1 ounce every 3 hours, which is awesome. That is just about a normal feeding schedule for her age and weight.

The doctor even gave me permission to alternate bottle feedings with actual breastfeeding sessions. Tess and I tried this afternoon and it didn't work. I told myself not to get discouraged, however. I'm sure once we get her eating regularly and actually "hungry" between feedings, she'll be more willing to work a little bit harder for her dinner. One thing at a time.

She looks so much more like a normal baby. The crazy IV is off of her head. The yucky NG tube is out of her nose. Right now, she's a regular baby who just has one IV in her foot and some heart monitors on her chest.

Because Tess didn't look "all scary" today, Hannah wanted to hold her baby Sister. They looked so cute together.

Tess has recovered enough to start to be a demanding, normal newborn. (One of the sad things about the NICU is most babies are so sick they don't cry. NICU babies are almost completely silent and still. So a robust newborn doing normal newborn stuff is totally unusual.)

Tess is now making lots of friends with the nursing staff. Each nurse only has two babies per 12 hour shift. But if Tess' nurse is busy with her other charge, another nurse will have to help entertain our demanding Tess. Three nurses told me today that Tess will cry just to get someone in the room with her. She doesn't need a diaper change, or her pacifier. As soon as a face appears over her crib railing, she's totally happy. The nurses have concluded that our Tess just wants company! I laughed and said that sounded like a fourth child, a baby who never wants to be left alone for long.

We are still waiting for the "big poop." I'm not going to feel completely easy about the success of her surgery until that happens.

Meanwhile, it's awesome to watch all the kind nurses cheering to get Tess out of their NICU and into our home.

Friday, September 17, 2010

Big News

I fed Tess from a bottle tonight!

It was amazing. It was only a teaspoon of breastmilk, but Baby Tess gulped it down in a flash. Then she fell asleep happily on my chest. Heaven!

Please keep up the prayers. The feeding schedule is super long- like 2 to 3 weeks before she'll be ingesting enough milk to keep up her weight and get home. That seems like an impossibly long time to wait. I hope I grow in the virtue of patience soon.

Falling in Love Under Difficult Circumstances

Having to put a brand-new baby into Intensive Care for the first few weeks of her life pretty much fit my view of a nightmare scenario.

Johnny and I had gotten ourselves into a parenting pattern by Baby Number Four. We started parenting our first child as granola crunching post-grad students. We adopted the "attachment parenting" formula all the way. Each of my first three babies got swaddled, held, carried, exclusively breastfed, co-slept and gently, gently moved into a crib at eight months of age.

Baby Tess neatly fit into our established parenting pattern until day six of her young life, when we suddenly had to hand over our desperately ill baby girl to a gigantic hospital establishment.

For the past two weeks, this newborn kid has undergone more medical tests, harder operations, and more blood draws than you can imagine. She sleeps in a crib. She uses a pacifier. She's eating some sort of weird liquid fats through her IV tube instead of breast milk. She lives in a giant NICU unit 45 minutes away from her family's home.

For almost all of that time, I've desperately prayed to God to get Tess out of this nightmare scenario FAST. "Please Lord, get Tess home soon."

Through the miracle of grace, I stopped freaking out about the permanent damage this hospital stay is going to inflict on my little girl's ability to trust and relate to the world. I started to understand that this scary, weird situation is not a result of my or Tessie's sin. Her healing journey was planned by God for his wider purposes-- and her hospital stay going to end when God says it will end.

In the meantime, as my Johnny said "Tess is writing herself one interesting Baby Book."

My youngest girl's Baby Book is not going to match any of her older siblings. Yet it is still a Baby Book. There is still love and joy and funny moments in the desert of the NICU.

God exists in the NICU. Love exists in the NICU. I've had much less bonding time with my newborn than I've wished. However, love is not a strict mathematical formula.

The moments that I've spent rocking my sick baby in her hospital room have the intensity of a desert experience. Being alone, means being close to God. Thanking Him in advance for the gift of healing and the joy of family life that Tessie and I have yet to experience together.

I'm already walking away from the NICU experience 'purified'. Simplified. A better parent and a better Catholic.

St. John of the Cross, pray for us to carry our daily crosses with pure joy.

Today Might Be the Day

That my little baby girl gets to eat again!

Tess had a great night. The doctors will make rounds this morning and may give the final okay to start her on a feeding plan.

Update: Today is not the day. The surgeons want to wait until the big poop comes. Come on Baby Tess--it's been 10 days, 9 hours and 11 minutes since your surgery--not that your Mama is anxiously counting the minutes or anything!

Thursday, September 16, 2010

Prayer Request

Tonight is the big night for Baby Tess. If she can get through tonight without any discomfort or vomiting, they might start to feed her tomorrow. Please join me in saying some prayers for her!

Also, could you please pray from Baby Ishmael and his family? This baby is Tessa's roommate and had similar surgery today. Unfortunately, the surgeons found much more extensive damage to his internal organs than they originally suspected. Baby Ishmael's Mom has radiated faith, joy and trust their entire stay. Tonight, she looked so worn down with the weight of the world on her shoulders.

Small Steps Towards Normalcy

Today is the first morning that I haven't spent with Tess since her birth. It feels a little lonely.

Last night she gave clear signs to us and the nurses that she was hungry and wanted to nurse. This morning the doctors are supposed to do her first "feeding assessment." I was so excited to hear that last night. However, this morning we didn't get as great a report from her night nurse. Tess slept fine throughout the night, but her stomach "output" is back to being high and a little bloody. Doesn't look like food or poop is coming today.

This morning I got to home-school my older kids, however. That felt great.

Wednesday, September 15, 2010

My Older Kids are Home

Three of my four baby birds are back in the nest. As Hannah reported tonight "Everything is A OK, except for Teresa."

Good News

After 8 days of anxious waiting after her surgery, Tess finally showed some solid signs of improvement today. Her stomach "output" is half the volume of the day before. The color is also much closer to "normal" stomach juices. This is a big step forward towards "feeding readiness."

Also, her ulcer looks like its healed.

We are now waiting for the first real "poop" of her life. The nurse told me today "I think I smelled gas today. That's a good sign." Can't believe that I'm so excited to hear that my pretty, blue-eyed girl can toot. But that is life in the NICU!

Thanks for all of your prayers!

Tess is about the same. Mom and Dad are doing much better stress wise, however. My older kids are coming home from grandma and grandpa's house tonight. Yeah!

I'm getting ready to do my commute into the city to visit Tess this morning. I told my husband today that the Children's Hospital Metro Stop is actually the same stop as Catholic University. "When I walked by Catholic U yesterday, I thought 'how much I'd rather be studying this stuff in a safe school room rather than living it!"

My husband laughed! I'm sure God is laughing with me too!

A little encouragement from Carmelite martyr Edith Stein. I love this saint so much. She was a bookworm scholar who was in the middle of writing the MOST beautiful explanation of St. John of the Cross' position on suffering. In the midst of her last revisions to the text, the SS tore her out of her Carmelite convent and sent her to Auschwitz for the crime of being born a Jew. I sort of picture St. John of the Cross saying from heaven "Excellent insights! Now go live it out!"

Here's an description of her last week on earth.

"Arrested on August 2, 1942, by the SS, she died one week later not very far from her home city of Breslau in the Auschwitz extermination camp. In that last week of her life she passed through the infernal network of Hilter's "final solution". She saw two intermediate transit camps in Holland, first Amersfoort, and then Westerbork. Others who had passed through Westerbork have described the deep sense of despair that overcame women in the camp. Understandably, the children were neglected, and an eyewitness account shows that Edith Stein did much to look after them. As Julius Marcan, a survivor, testified "It was Edith Stein's complete calm and self-possession that marked her out from the rest of the prisioners. Many of the mothers were on the brink of insanity and had sat moaning for days, without giving any thought to their children. Edith Stein immediately set about taking care of these little ones. She washed them, combed their hair and tired to make sure they were fed and cared for."

From Westerbork, Edith was able to send back a compelling message to the nuns at her monastery in Echt: "We place our trust in your prayers. There are so many persons here in need of a little comfort, and they expected it from the sisters."

She had only herself to give: her attentiveness, the time she took away from her own worries, and her sense of religious hope. She gave all that she had, because she was fully present with and to others, and she was willing to do as much as she could to share their burden of suffering so as to lighten the load. She acted as a compassionate sister to the suffering, to "be of some help to them."
(Carmel Clarion, March 2010, pg 8).

This last passage really helped me focus on my time with my daughter in the NICU. There is so much that I can't do for her. I can't feed her. I can't sleep next to her. I can't take her home. Yet, love is still a powerful force for good and healing in the NICU. I can give my daughter my "attentiveness, time from my own worries, and my sense of religious hope."

Teresa Benedicta of the Cross, please pray for us.


Monday, September 13, 2010

The Heartbeat of Grace

I spend a lot of my day watching Tessie's heartbeat on her NICU monitor. Up and Down. Peaks and Valleys. Little check marks all lined up in a row.

I've started to think that living in God's grace is a type of intimate heartbeat.

Grace is not a flat plateau. There is no steady rest in the spiritual life. Instead, the movement is constantly up and down.

There are moments when I feel like I'm free falling from my safe, comfortable spot of trusting God. Just like the heart beat rhythm, however, grace is always there to pick me back up again.

Today was another hard day. I walked into the NICU alone (Jon had his first day back at work) at 9 AM after a 2 hour commute on the subway. I found my little girl all alert with her pretty blue eyes open and a special smile just for her Mama. However, her stomach "output" was a sickening dark, bloody red.

Lots of red output is not good. It's a sign that her intestine is still tightly closed. Before the doctors will begin feeding Tess real food, they want her stomach juices to be clear and a mere 2 mL each hour.

Tess is so, so far from healing from her surgery last Tuesday. She is so, so far from going home.

After a long day of tests and IV pokes, I started crying hard at 7 PM. Jon had stopped by after work and was reading Tess his favorite children's book, Winnie the Pooh. I started crying because I can't believe that we are still stuck in the awful "not knowing" six days after surgery, ten days after my first ER visit and fourteen days after her birth.

I prayed. Nothing seemed to help. I couldn't believe that I still couldn't take my beloved baby girl home with me. I had no idea how I'd tear myself out of her NICU room this night.

After several minutes, Tessa's old nurse from last night stuck her head into our room just to say hello. She asked us how we were doing. I said "not to good." I held up the bloody "output" trap to highlight my point. "Oh no, no," the nurse said. "That is a much better color than last night and there is a smaller amount as well."

"Are you sure?" I said.

"Yes, yes. I was very concerned last night. That is why I called the surgeon. He said we need to give more time for the ulcer medicine to work. See it is already working. Soon it will do it's job."

I didn't feel immediately better, but the heartbeat of grace caught up with me. After the kind nurse left, Jon turned out the lights and sang lullabyes to our baby. I wrote a quick email to a friend in the dark. Afterwards, we walked out of the NICU holding hands.

Sometimes, I can walk away from Tessa's crib and just pretend that my baby is happily asleep in her nursery, a mere 45 minutes from my bedroom door.

Grace. Faith. Prayer. Trust.

St. Teresa of Avila, please watch over Tess tonight.

Sunday, September 12, 2010

Missionaries from Africa

During Tessa's sickness, my husband and I have run into three Nigerian priests who are all Dominicans, all missionaries, and all Catholic Chaplains at local hospitals in D.C. Our Archbishop certainly was guided by the Holy Spirit when he made these assignments.

Each of our "African Fathers" had a unique combination of total love, gentleness, ease in the face of suffering and theological strictness. They were each true Fathers.

The priests greeted us with kindness and love. They prayed deep heartfelt prayers over our daughter. And then they took Jon and I too task. They encouraged us to use this tough situation to become better Christians.

We ran into our first African priest seconds after our kid got admitted into the NICU. My husband grabbed my hand and pulled me into Sunday Mass at the hospital. I don't think I've ever been more unwilling to listen to Jesus. I'd already received communion a few hours earlier. My kid just got admitted into the NICU. I decided that I'd more than fulfilled my Sunday obligation. It was time for me to rush home, brush my teeth for the first time in 48 hours and rush back to restart my vigil over my sick newborn.

So when Father A started his homily last Sunday with the question: "Why are you here?" I answered "because my husband made me come!"

In his excited African accent, Father A kept hollering "Why are you here? Why didn't you just stay in bed this morning? What did you expect when you decided to follow Jesus? Tea and cookies!"

He yelled this last line "Tea and Cookies" until it shook the chapel.

(And the answer, of course, is that in order to follow Jesus we have to carry a cross.) But the saying "What did you expect, Tea and Cookies?" has become a humorous mantra thought this first, hard week.

Two hours after Father A's great homily, the Father, a nun, Jon and I were all waiting outside the NICU to preform an emergency baptism on my little girl before she was rushed to Children's Hospital for surgery. Sister Kathy really racked Father A over the coals for having an overly excited homily. "You went over the line, Father," she said. "There were people like the Benjamins in that congregation who have real problems, the parents of very sick children."

Father A started to blush. Jon and I both protested. His homily was great. It was just what I needed to hear. And in that moment, in the hallway, I did feel blessed.

Father A and the two Fathers who ministered to us this week at Children's Hospital, did me a great service. They were kind. They were compassionate. But they also pushed me hard spiritually.

Carry your cross. Pray for others. Give thanks for a Faith that sustains you. "I know you are praying hard, but you need to pray harder.""Forget all those who are being unkind to you. Your energy is so precious right now, you don't have space to deal with that stuff right now. Instead, cherish the people who are helping take care of your children, your spouse and yourself."

The African missionaries are great in a hospital, because they are not scandalized by children suffering. Children in their countries see greater misery all the time. Instead, they remind us to be thankful to the medical profession. They remind us that "tears come at the night, but joy comes in the morning."

Lord God, thank you for the gift of the priesthood.

Backsliding

We found out that Tess is doing a little backsliding. Because she hasn't eaten in over a week, acid is eating away at her stomach lining. My little girl needed her first blood transfusion today. That transfusion was four hour process, which meant that we couldn't hold her all day.

Of course, the new "stomach problem" means that we're even further from starting to feed her and then take her home.

I joked with Jon that next time I'll think twice about naming a daughter after a saint who PRAYED to have the grace of sickness and then was happily paralyzed for over three years.

St. Teresa of Avila, we pray for Baby Teresa's speedy healing. Please send her home in less than three weeks.

Baby Steps Towards Home


Tess moved into a "regular" crib instead of a heated "baby table" yesterday. She figured out how to hold a pacifier in her mouth by herself. We're weaning her off oxygen. She's got this scary tube in her head that's just a "back up" IV port. It's frustrating to her vain Mama who wants to put cute hats on her head- but that IV will probaby stay in her head until we go home because Tess is labeled a "hard stick", i.e. a baby who DOESN'T LIKE IV pokes. The yellow tube (by Jon's hand) is what we desperately want to go away soon. It's called an NG tube. Currently its sucking up all the yucky stuff from her stomach that isn't going down her intestine like it should. As soon as the color turns a nice, normal light yellow, we can start feeding her breast milk. And as soon as she can hold down breast milk -- We can go HOME!
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Saturday, September 11, 2010

How to stay sane in the NICU

I hit bottom yesterday physically, spiritually and emotionally. So Jesus sent us a Dominican priest for Confession, the Eucharist and some much needed spiritual direction. Jesus loves us all so much!
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View from our hospital room window


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Friday, September 10, 2010

Kangaroo Care with Mommy


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Sick Tess


Reading Winnie The Pooh to Sick Tess

Loss of Control

I'm homesick in my own house tonight.

All of my four children are currently in different states. My three oldest kids are spending two weeks with their grandparents in West Virginia. My youngest daughter is spending the night alone in the NICU in Washington D.C.

I miss my old life. I miss laundry, and cooking, and home-schooling, and going to Starbucks while pregnant and pushing the three year old in the new baby's stroller.

I cried a lot during Mass at my home parish this morning. I'm a mother without any children or any domestic responsibilities for hours each day.

Exactly one week ago, I took a sick baby into the ER. In this week, God asked me to give up control of my life.

I get a little snobby as a Carmelite. I get a little self-satisfied with my lack of money, a lack of a car and a lack of volunteering for 7 million community service committees. "Look how well I'm doing letting go and letting God direct my life," I think.

Then God asks me to give up sleeping in the same house as my four children- for MORE than a week, maybe more than TWO weeks. Ouch!

The concluding song at Mass this morning (which happened to be the Parish School Mass) was a children's song that went "Give It Up, Get It Back" about receiving our good measure flowing over after we sacrifice things to God. This week I gave up each one of my children. I gave up control of my life. God's promise to me is that one day my little domestic church will be returned- all the children in good health and purified by the fire of Faith.

Tess Update

My baby girl poop! That's a huge milestone in the recovery from abdominal surgery. Jon and I did a happy dance in the hall. It made all the nurses laugh to see two parents so excited about a poopy diaper.

I spent a blissful 5 hours holding my baby girl today. (Well, I kindly shared some of the time with her Dad). My girl is SO happy to be on her Mommy. She even tried breastfeed today, which I thought was adorable. It's been over a week since I've feed her that way. I can't believe she remembered how to do it.

At 4 o'clock we were just ready to get an early dinner, when little Tess decided to inflict some extra gray hairs on her parents. First, she started throwing up blood. There were lung x-rays and heart x-rays that didn't get "read" for several hours. Then the nurses announced that little Tess had caught a drug-resistant staph infection at her previous hospital. The infection caused us to move into a new hospital room far, far away from any other NICU babies. I've spent the last five days bonding with the parents of all our neighbors in the NICU unit. Now, we're all alone in a lonely room.

At 7:45 the resident came by and assured us everything is normal. Tess has a normal heart. Good, clear lungs. The staph infection calls for 7 days of super antibiotics- so we're in the NICU at least another week. As for the loneliness, I'm a Carmelite. I'm sure being 'in solitude" is better for my prayer life.

Many thanks for all of your prayers!

Thursday, September 9, 2010

NICU Prayer Update

Thanks for your prayers for Baby Joseph. Both his parents looked so much better today. Baby Joseph's brain surgery went very well. Everyone has much more hope and peace.

I also meet Baby Ishmael Mom today. He was another baby I worried about. Baby Ishmael and Baby Tess entered the NICU on the same day and we share a glass wall between our NICU units. Every time I looked at Baby Ishmael he was dressed in cute outfit with a darling baby blanket but he was sleeping all alone.

It's so hard in the NICU because most of the Moms are too sick to visit their babies immediately after birth. Therefore, the early NICU days are mostly filled with solo Dad visits. But today, I finally met Baby Ishmael's Mom. She's a Muslim immigrant from Egypt. She said her Mom is calling everyday worried about her newest grandson. Grandmas are the same the world over.

Baby Ishmael has a rare condition that caused him to be born without any ears. So please pray for him. He looks so sweet and good natured.

Our NICU unit is a mini-UN. The last names in our unit come from all ethnic groups and all nationalities. Children's Hospital in general is an extremely diverse place. In the parking lot there are Ford with broken mufflers parked between a Subaru station wagon and a Lexus. Sickness hits every ethnic group and every income level.

It's also an amazingly open, humble place. Every parent in there is a parent to a sick child. People are open and friendly. People pray for total strangers that they met for one brief moment in the hall. The whole hospital is a "pro-life" sanctuary where every child's life is valued no matter what.

An Embarrassment of Riches

Being a Catholic in the NICU means possession of an embarrassment of riches. We have the sacraments. We have a church family that prays for us. We have an understanding of the concept of redemptive suffering.

When I found out that my newborn needed emergency abdominal surgery, I immediately asked to have her baptized. If my baby girl had to undergo all of that suffering, I wanted it all to mean something. I wanted her incorporated into the mystical body of Christ. I wanted her hurt to save souls.

A birth defect is different from the ordinary effects of sin. My baby girl didn't get hit by a bullet or poisoned by an environmental toxin. The Creator of the World, the One who lovingly knit together my baby's body in the womb decided in His infinite wisdom to drop a purl stitch in the formation of my baby girl's intestine.

Somehow, in my Faith, I'm okay with that. I sort of picture God saying to himself, "What if I put a web in Baby Teresa's intestine and then allow all of these people the glory of co-fixing my creation? It would be a sign of Faith, of prayer, and a great glory to my name to show the sacredness of human life."

Having a sick baby is every parents worst nightmare. Yet, when you're in the middle of it, it's not so bad. Mortal sin is bad. The Devil is bad. Sickness is just sickness. Suffering waiting to meet the healing power of Jesus.

At her conception, my baby girl got assigned the Cross of a broken intestine. In her little body, she makes up for the lack in the suffering of Christ. I can picture Tess raising her hand in excitement equal to that of Francis Xavier and telling God: "You mean for a few weeks of pain, I get to transform the hearts of my parents, my siblings, my grandparents, my father's co-workers, the cynical Catholics in my church, and save many souls from Hell? Game on!"

My cross is to watch my little girl suffer. It's Mary's cross. I've got to watch my seven pound girl lug her huge cross through Children's Hospital.

I've decided that when people say "I can't stand to see innocent suffering in the world" what they are really saying is "I don't want to follow in Mother Mary's footsteps." It hurts to watch our children suffer. It's a painful breaking of the heart. But Mary would tell us, "what else are you going to do?" God hands you the strength to stay still as a witness, to give love with your eyes, and to pray deeply with a bleeding heart.

The Best of Days, the Worse of Days

First, today was a major victory. I got to hold my baby Tess skin to skin, or what is called in the NICU"kangaroo care." It was so amazing. I haven't gotten to hold my baby in such an intimate way for over a week. Jon said the baby's eyes were saying "Finally, My MOM!" for the full three hours.

I held the baby against my chest and helped Jon balance our checkbook online in our NICU room. It felt so normal. It felt like we were a regular family again. A little kangaroo care brought down Mom and Dad's blood pressure as well as the baby's heart rate.

The second accomplishment is that Jon and I actually left the hospital voluntarily during day light hours for the first time in a week. (My Dad teased that we were becoming vampires). Jon drove me to my OB to check out my c-section stitches. I confessed that with all the drama around the baby, I'd totally neglected any "wound care" advice for over a week. The doctor said that my incision looked great.

Now, the sad part. My baby looks great. She's back to her natural color. She's showing her personality again. All the doctors and nurses are happy with her progress. However, there is no movement on her bowel or stomach. We can't move forward on her feeding routine, until stuff starts moving smoothly though her intestine.

After her surgery, Tess has also started having "apneic breathing episodes" which means that she holds her breath for more that 20 seconds. She's on a forced oxygen tube, so this problem isn't dangerous. However, it's totally annoying and scary to me, her Mom. They aren't sure why she's holding her breath. I'm hoping that this mystery is soon solved. I don't want the "need for oxygen" to be one more thing that is keeping her in the NICU.

These two problems mean that Tess isn't coming home for at least another week, maybe two. That's an incredibly short stay in the NICU compared to the premie babies who have to stay for 14-16 weeks. Still, the total of a three week hospital stay seems like a life time to me and Jon.

That's were I am right now. Relearning the lesson "my strength comes from calm and trust in the Lord."

Happy Birthday Baby Zelie!

Betty Beguiles had the CUTEST baby girl yesterday. Stop by her blog and tell her Congratulations!

Wednesday, September 8, 2010

A Hard Day

Last night, Jon and I were so excited after the baby's amazing surgery that we spent the night in the "quiet room" of the NICU. Ugh! There is a reason that they make those gorgeous leather chairs donated by the March of Dimes so uncomfortable. It's better for us parents to sleep at home.

Today, I felt groggy and sad. All the doctors and nurses are so positive about Tess' post-op progress. However, her recovery is not going to be an easy two or three day affair. We've got a lot of small steps to get through before the exciting last stage of eating breast milk and going home.

Today was hard because Tess spent most of the day moaning in pain. It turns out that giving a newborn morphine is a delicate affair. To much pain relief and the baby will stop breathing. Too little, and she will hurt. Because Tess was doing so well on her oxygen level her nurse didn't want to move back to the ventilator that she had immediately after her surgery.

Jon and I spent the day in the NICU rubbing Tessie's cheek, singing songs, reading Winnie the Pooh and generally feeling pretty helpless. We can't pick her up yet from her NICU crib because she just had abdominal surgery.

Now we are back home. It was a big step for Jon to voluntarily leave the NICU during day light hours. It was 7:30 PM, but still, I got to watch the sunset during our drive home.

I'm home now, without my older kids who are spending the week with their grandparents. I never thought I'd be so happy to do laundry. I find normal housekeeping tasks so comforting after days spent in sterile hospital rooms.

I'm making friends in the NICU. Suprise, surprise! My little aposolate of "cheerful conversation" is finding good use.

Could you please pray a special prayer for Tess' roommate Baby Joseph? Little Joseph has hydrocephalus. He's the fifth child of two high school sweethearts. The baby is in great health (he's got the loudest cry in the almost silent, sickly NICU) yet his parents are having a hard time. Just today they found out that the baby's MRI might show that he's already blind.

Tuesday, September 7, 2010

What a Week!

Wow! I'm wandering around the NICU at Children's Hospital right now, dazed and overjoyed. What a week!

On Friday morning, my 4 day old newborn passed her first doctor visit with flying colors. We merely left the appointment with a prescription for Zantax due to her "reflux".

At 7 PM that night, the doctor and I were trading frantic phone calls to each other. My daughter suddenly refused to nurse for a full nine hours.

At 8 PM, I took a sick and yellow baby to the ER. At midnight we got admitted to the pedatric unit on the hospital where I had my baby a few days before.

Jon and I started a 36 hour vigil trying to get our daughter healed of jaundice. During this time, her vomiting trouble increased.

Sunday morning I broke into tears because they put my daughter under a heat lamp (meaning that had to go even more hours without being able to hold her at all.) By 3 PM that day, I'd signed a consent to transfer her to the NICU at Children's Hospital for emergency surgery. It turned out that Tess had a birth defect in her small intestine. The poor kid hadn't been able to process ANY food for the past 6 day. How she hung on to a weight of 7 pounds and 2 ounces with a complete blockage is a miracle.

Monday we waited for Tess to recover from her dehydration.

This morning, we got a call at 5:30 AM that we needed to come to the hospital to sign a consent form for surgery. We had a beautiful morning. We got to Tess room in the NICU in time to watch a sunrise over the view of the National Basilica from her hospital room window. I got to hold Tess (with all 20 of her IVs) in a chair while Jon read her chapters of "Winnie the Pooh." We prayed a rosary. We took a million pictures.

The time before her surgery was so intense. I had no idea if Tess would make it through her surgery. There were a mass of 20 residents who showed up to do runs while I was holding Tess and I started to flip out about her upcoming surgery. I held onto her body with a tight grip and thought about running away with her. At 11 AM, I had no idea how I'd survive the long 3 hour wait during her surgery.

Prayer works!

By 1 PM, the surgeon met with us. For the first time, I had confidence in Tessie's surgery. I fet comfortable handing her over to this surgeon.

Tess left for surgery at 2 PM. In the waiting room, a friend with a sick baby stopped by to give us a friendly chat. We were sitting next to the Dad of our NICU roomate. It was so sweet to see these three Dads of sick infants chat about God and humility and life in general for 90 minutes.

Then our friends left. Jon and I were all alone waiting for our girl to finish her surgery. We prayed the Daily Office together. I got so nervous counting down the pages until our official Carmelite prayers were finished. I had no idea how we'd handle the long wait once the Daily Office was finished.

We finished. We freaked out together.

Then we saw a part of the surgery waiting room labled "the Quiet Room." Inside, we found a copy of the Torah AND the original English translation of the Latin Vulgate of the Catholic Church from 1606. For the next hour we read Tobit. The Scripture was filled with foreign spellings and "thees" and "thous". Yet Jon and I read in amazement about how closely the Sacrament of Marriage is tied to healing and the promise of "strong children born of Saints."

We were so into our Scripture studies that we missed the first update of our daughter's surgery. Then we had a tense 20 minutes while we waited again for the doctor to come out of surgery to update us on her condition. Jon prayed a rosary. I was so tense I could only pray "Jesus" or 'Mary" with every breath.

Then the surgeon came out and changed my life. It was the simplist type of surgery for Tess' condition. I asked about follow up surgeries and the doctor said "she's cured for life!"

Tess is now in her NICU room with a nurse recovering from surgery. We are waiting to see if she's got any complications from surgery. The next task is for her to eat and poop on her own. Once that happens we can go home!

We promised Mary that our first stop will be at the National Basilica. We'll put Tess at the Statue of Our Lady of Mount Carmel and give great thanks for her healing.

Thank you for all of your prayers! God is very, very good!

Good news!

An update from Abigail: "Tess came through surgery perfectly. The surgeon gave excellent news--her defect was the most minor kind of birth defect they could have encountered. She is fixed for life! No further surgeries are expected. Please pray for her recovery. Thank you, God!"

Whew! What wonderful news!

Here we go

Tess is leaving for sugery in 20 minutes. Please continue to pray for Tess, the surgeons and staff, and Jon and I.

Baby Tess' surgery is today!

Abby just let me know that baby Tess is third in line for the operating room today. Her surgery should happen around noon Eastern time. Things look hopeful. They got a clear picture of the blockage in her small intestine. She's really recovered well from her severe dehydration. (Abby said she never thought she'd be so happy to change diapers or hear a newborn cry during her heel pokes!) Please join Abby and Jon in asking for the intercession of St. Raphael for the surgery team and for the healing of Tess' little body.

- Jen

Sunday, September 5, 2010

Spiritual Bouquet for Teresa Benjamin

Please pray for my little Tess. She got admitted to Children's Hospital in D.C. today. She needs surgery on her small intestine on Tuesday. God is very good. I got her an emergency baptism at our old Hospital with a visiting Nigerian Priest and a Holy Cross Nun as her godmother this afternoon.

You can leave you prayers and offerings for Tess and her family in my comment section. Thank you!

Friday, September 3, 2010

Urgent Prayer Request

My baby's jaundice went from mild to super high this morning. I've only got a few more hours of home therapy time left before I need to bring her back into the hospital. Please pray that Baby Tess starts to recover quickly. Thanks!

I'm off to the hospital ER at 7:30 PM to get an eval for admission. Guess we weren't done shining our light there yet!

Wednesday, September 1, 2010

We're Home!

Thanks so much for all of your prayers and blessings!

My husband read all my blog comments to me over the phone while I was alone in my hospital room last night. It was so sweet to receive my aposolate of "cheerful conversation" back from my own blog readers.

Baby and I returned home today around 3 PM.

As always, I wouldn't be a Carmelite if I didn't have at least one final cross to carry from my hospital stay.

They brought me Communion at 10 AM. I had such joy to be able to kneel and receive our Lord. (It's the simple things in life that bring you to tears after child-birth!) It was great to have God, of course, but a timely Eucharist should have been a cue to me that I was going to need supernatural strength to get home.

Baby and I were discharged at 11 AM. We were both completely ready to leave the hospital at 12:01 PM.

However, my nurse couldn't find us a wheel-chair or a wheel-chair chaperone in the entire hospital for the next 2 1/2 hours! For that entire time, I was exactly one elevator ride and one 15 minute taxicab ride away from my home, my husband, and 3 adoring siblings who had set up a surprise "Zero" birthday party for my Tess.

It was hospital policy to refuse to let a new mother walk down the elevator by herself and or carry her newborn baby alone. Both gals MUST exit safely in a wheel-chair pushed by a special chaperone. The hospital had instituted a new, improved wheel-chair delivery system -which clearly was not working today. The entire Maternity Staff, especially the receptionist were beside themselves.

I sat alone in my hospital room with Miss Gorgeous and felt totally helpless. Mr. Benjamin was at home dying from the stress of prolonged separation from his darling girls. He called my room every thirty minutes asking for an update. There was no news to give him. My wheel-chair request had been received, but there was still no time-table on when my wheel-chair would appear.There was nothing he could do, as nothing in his darling 6 foot 5 inch frame counted as either a wheel-chair or as an officially approved wheel-chair chaperone.

As extra penance, I couldn't order lunch because I'd already been checked out of the hospital computer. Of course, you know how hungry breast-feeding a newborn makes you! I was seriously considering handing a complete stranger my credit card in an attempt to get a turkey sandwich from the Starbucks cafe on the hospital's main floor.

At the height of my self-pity, I turned on the TV. Something crazy was happening about six blocks from my hospital room. I'm sure it will hit the national news tonight- a guy, with a gun and/or explosives, held up the Discovery Channel's national office. The emergency news report puts things into perspective. I don't know if my delay was supposed to help with penance for that specific situation, but it suddenly felt like God could have a good reason to ask Tess and I to keep away from our home for a little while longer.

Finally, at 2:45 a lowly Maternity Floor Lab Tech with- a GIANT necklace of Our Lady of Gaudalupe -- got drafted to push me to the elevator with a wheel-chair stolen from NICU. There was only the three of us Mary's girls and lots of luggage, flowers (thanks Jen and Hallie!), a clunky carseat and that silly hospital policy to uphold. We had to put Tess inside her carseat and then put the carseat on top of my lap. A "IT'S A GIRL" balloon bopped the Tech all the way downstairs.

The receptionist cut off the last security band off of Baby Tess and we were finally free. The receptionist talked a mile a minute. Tess was so beautiful. I looked so healthy. I was too tired to do anything but nod. Finally, she asked the dreaded question "So this is number 4. Will you have more?" After days of dodging that question, I finally responded with the complete truth. "It's up to God," I said simply.

The receptionist broke out into a giant smile. "So you might be back! We might see you again?" she shouted. "That's fantastic!"

"Yup, that would be fantastic!" I said. "Next time, however, I'm bringing my own wheel-chair!"