Kangaroo Care with Mommy

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!

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!

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.

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

Baby Tess

Sibling Love

Zero Birthday Party for Baby Tess

Meeting the Siblings

Baby Tess- Day 3 Going Home

Baby Tess Day 2

Baby Tess Day 2