Palm Sunday Preacher - Inspiring the Sermon

riday, March 26, 2010 10:25 PM, EDT "We're here! We're here!" James squealed and clapped his hands as the plane landed in Nashville and our friend, Margaret Riley, safely delivered him to my parents for 2 weeks of playdates, pancakes, golf, and better weather. Thanks, Marge.

Back in NY, Daddy squeezed in a nice visit with MG while she tried nasal cannula again. She did okay but was uncomfortab

le due to gas, we believe based on the evidence. She settled down, went back on CPAP and got her reward (or was it his?) of cuddle time in Daddy's arms.

Downtown, Mommy bemoaned the fact she's become the "Palm Sunday preacher" -- my 5th time in 6 years at First, Brooklyn. The message hits a little too close to home. When can I clap my hands on Easter and say "We're here! We're here!"

Until then we'll keep marching on... By the way, if you missed it earlier and want to sponsor our team in honor of Margaret Grace in the March for Babies on April 25th go to: www.marchforbabies.org/MargaretGracefpcb or www.marchforbabies.org/MGs_Mom or better yet join us in Central Park.

"This Too Shall Pass" --Grief and Gifts

Monday, March 15, 2010 11:50 AM, EDT

Grace has had a good couple days. She is back to baseline after the surgery, requiring 23-25%O2 on CPAP. Calm and getting her beauty sleep before her Mimi's visit tonight.

We also share good news that her old friend, Jayden, is trying CPAP today at LIJ. Pray that he passes this trial. We were overjoyed to hear he had reached low vent settings to do this.

Certainly these two have not been spared many trials at a young age. In Lent, we are reminded of the cup that is not taken from us. But we also celebrate all that is possible in God through their miraculous life and fighting spirits.

Some prayer beads were given to us early on with the Infant of Prague on them. I held these when I went to St. Vincent’s and prayed over MG and Jayden.

The beads make a tiny bracelet to fit a baby's wrist. On them hang a medallion of a baby. They are from the cathedral in Prague.

Our Lady of Prague is a famous church/shrine that is visited by many tourists and pilgrims. Prior to her trip, our friend had lost 7 people in one year. It was a difficult time from which she learned "that life is a very precious gift and it ought not to be taken for granted.We must do all we can to honor it, cherish it, and protect it."

In the card, she writes:

"As we were standing in that church, a group of American teenagers gathered in front of the shrine and began to sing.(they were a high school choir) I do not remember the name of the hymn but it was particularly moving to me because it talked about God's presence in all manner of situations. Regardless of what befalls us, God is ever present.

The lady who sold me the medallion told me that Our Lady of Prague is a way of saying that God is our mother. And she is on the watch for all of her children, ranging from Baby Grace and James, to Beth and David. The funny thing is that when I bought this, I knew it was not mine to keep forever. It was mine for awhile and I have kept it in a special place in my house since then.

It is yours now, Beth and David. Take it and I pray that it reminds you of the love and presence of God when you need it most. All I ask is that when you are done with it (and only you will know when), you either pass it on to Grace or another person who may need its message. I trust your judgment.”

I wish I had 300 of these to give to all of you who watch and pray, watch and pray, over the new life of our daughter and hopefully new life in all of us. But I feel the story blesses just the same.

Diva Headband

Friday, March 12, 2010 10:11 PM, EST

MG turned 39 weeks gestational age today, 10weeks 1day out of the womb. She is struggling a bit after the surgery, but we are hopeful she can wean back down to her pre-op settings or better and relax when the steriods have worn off.

The day was full of other milestones though.
I got to hold her today for 2 hours. It took us both some time to adjust to this. She graduated to an open air bed. I also helped the nurse give her a sponge bath for the first time.

The nurse made a silly bow for her CPAP headband because MG is now known around the NICU as a "Diva." She is very particular and hard to settle. She did open her eyes for her diva headshot though, see photos page.

When Hope is a Tube of Lipstick

Wednesday, March 10, 2010 9:27 PM, EST

Because of a miscommunication between ENT and Neonatal, MG's bronchoscopy was postponed till tomorrow at 4PM. Anesthesiology came to talk with me today, but it was pretty routine as this is our third time in the OR. We also had a visit from neurology, which emphasized more aggressive PT for her left brachial plexus injury. MG was fussy most of the day because of all the consults she had to have. I spent the afternoon trying to advocate for more consistent nursing care so the PT gets done regularly!

Today is "Wellness Day" at Columbia. A woman who lost a child in the NICU organized a bunch of professionals to volunteer their services offering mini-massages, facials, and manicures to stressed out parents of the children's hospital. It's a pretty nice gift for a pretty ragged crowd that gathers in the family lounge on our floor.

Before this experience, I would have been skeptical of the effects these self-care measures have when dealing with chronic issues. Yet, I have experienced how looking like you feel better helps a little in feeling better if only because it helps others treat you as more than just a patient. I said before that this kind of experience will make you try anything. Before the last bronchoscopy, I went to the pharmacy to buy band-aids and lotion for my hands that crack and bleed from all the sanitizing. I found myself staring in a daze at a make-up display remembering my mother’s advice during my brooding teenage years. “Put on some lipstick, it will make you feel better.” I pulled out the hue that looked most like her favorite, Frosted Apricot. The label read, “Hope.” (Confession: Although I rarely wear them, it’s always been a secret dream of mine to have the job of coming up with lipstick and nail color names). I bought that and a tube of concealing foundation. They have served me well. The foundation has convinced at least 3 separate people that I am “well-rested.” The lipstick, well, it turned out to be more of a neon orange than a frosted apricot, but after that fearful day, I realize Hope is kind of like that…a little too bright to match what else you have going on.

So I am grateful for the woman who every Wednesday revisits the place where her child lived and died to make sure other parents get a small reprieve from the stress or at least, leave looking like they have. This morning, David and I were just talking about how much more we now appreciate the importance of small gestures in communicating the continual presence of grace in our lives. Yours have made all the difference for us.

Melting Flakes of Snow Will Catch You When You Fall

Thursday, March 4, 2010 9:19 PM, EST

Fold yourself against
Me like a paper bird
Tonight we'll fly awhile
Just give me the word
And hold onto me
Like I hold onto you
A steeple holds a bell
The night sky holds the moon
Melting flakes of snow
Will catch you when you fall
Baby that's not all
Then like falling stars
Back down to sleep will go
Into our waiting arms
In orbits round the glow
Cover lets and down
Will catch you when you fall
Baby that's not all (Josh Ritter)

Davi

d and I were able to hold MG for the very first time on Tuesday (see photos). Perhaps, because we had built it up so much, it was bound to flounder. It ended up being a sad and stressful experience for me (David reports things going a bit better for him). When the nurse took her out of her isolette, we discovered she made loud noises when she inhaled. It is called Stridor syndrome and is caused by a narrowing of her upper airway (this is in addition to the stenosis/edema lower down in her subglottis). The effect is that she squeeks when she breathes. But when she is upset, it is harder for her to breath. When she was put in my arms, she writhed and the sound began to get louder and louder until she was squawking. She would not calm down. We made eye contact but only for a moment; she did not respond to my voice as she can when I talk to her through the portholes. We were strangers. It felt like she was a baby bird fallen from her nest and I was the unfamiliar hands that picked her up. The squawking escalated and her oxygen dipped. The nurse took her away and spent ten more minutes quieting her down in her bed. Because the doctors are now concerned about this upper airway along with the area they dilated and her chronic lung disease, the nurses have not wanted to upset her again and have postponed us holding her again. She needs to remain calm and holding her doesn't calm her now. It's something like her breathing that requires practice and patience.

I've been pretty nervous since Tuesday, especially as she inches back up on oxygen and her chronic lung disease shows itself. And this, even before she is weaned off the steroids that are helping keep her airway and lungs clear. But today, she remained steady and she was easy to calm after waking. David made her a mix for the new iPod I bought her. (Yes, 2 weeks shy of age 0 and she already has one). We discovered she likes Springsteen but not the Dixie Chicks. I'd say she has classic taste except she likes my singing "Go to Sleep Little Baby" the best.

We hope we can find enough soothing methods to help her keep her oxygen needs down low enough as she weans off the steriods to convince the doctors to let her continue on CPAP. Today, David and I visited separetely, but we both felt more confident about her and that we can try holding her again soon. There was no concrete evidence for this, just a sense, kind of like the one I felt while she was in the operating room when it was snowing outside.

Until then, we'll keep playing our iPod's, especially songs by our favorite singer-songwriter, Josh Ritter.

Melting flakes of snow
Will catch you when you fall
Baby that's not all

Prayer Falling Like Snow

riday, February 26, 2010 9:16 PM, EST DAY 58

David and I had a nice, long day with MG today as church was closed due to the snow and James went to play with his friend, Acadia, and his aunt Maggie again. We still have a long road ahead and the longer the tube is in, the greater the chance that more swelling can reblock her airway and we are faced again with yesterday's options. The lows from scares like yesterday though are so low that relief from them feel like exaggerated highs. MG is doing well. We've noticed her discomfort in having that tube down her throat and now that we are aware of it, it is harder to watch. They are weaning her slowly over the weekend and giving steriods to prepare for extubation on Monday. Today was not without it's drama though. Around 5PM as we were preparing to leave, she extubated herself. She's quite fiesty and strong when she is awake and she yanked it out of place. This alarmed us all as she dropped and they tried to figure out why she was dropping until they listened to her chest and heard her wheezing. I was unhappy about this as reintubatin

g causes trauma again to her already swollen subglottis. She is now swaddled and so calm her heartrate is dipping a little but not too worrisome. She was also happy to have us hold in her pacifier for long stretches of time today.

Yesterday was an emotional day. The snowstorm brought beautiful large flakes that floated down blanketing the city. My sister said it was good luck as our other successful transfer and surgery happened during the snowstorm. She thought maybe it makes usually anxious New Yorkers slow down. I wondered if it was some sort of cosmic sympathy. David and I each had time alone with MG before her procedure, we gently laid hands on her and prayed our favorite verses and hopes for her. In the operating room, we prayed silently together and then read our verses to each other. I felt a peace come over me (I've heard about this sensation, but can't remember feeling it before) as I imagined and prayed for every inch of that operating room. Then I became aware that prayers from the outside were falling on me like the snow just as I was hoping my prayers were falling on the doctors and nurses and every inch of MG. Before we knew it an hour had passed (I was honestly amazed to discover I could pray that long without noticing). This in itself was a blessing to be relieved from the grueling wait. Dr. Guerstein came out twenty minutes later with photos of her airways and news that it was "so-so" but with the wider airway he was able to make and the treatment plan he prescribed, he was cautiously optimistic.

David got to "hold" MG for the first time when he was asked to levitate her body as they changed the bedding that she had peed on during her episode. I was jealous and am eager for her to transition to CPAP when we can eventually hold her to our chests.

Narrow Airway

Tuesday, February 23, 2010 11:07 PM, EST

A trying day. Beth compared it to the two-man bobsled televised on the Olympics tonight.

Beth and I just got home from the hospital. She had been there since 2, I arrived at 5. MG was having unexplained bradycardia episodes today--basically her heart rate was dropping. A normal range is 140-160. She was dropping to 80, then she'd shoot up to 180. It lasted for several hours this afternoon, causing great concern and anxiety and scratching of heads among the doctors. Her other vital signs are good. By the time we left, she was back up to 110-120--still low, but heading in the right direction.

This was all on the heels of worse news today. Our doctors conferred with the Ear-Nose-Throat (ENT) specialists and they informed us that we need to be prepared that they may have to do a tracheostomy when they go in to explore her blocked trachea. We were told that surgery is difficult on kids who are still so young and small, and that a preferred method is to put in a "trach" and let the child grow for a few months before surgery is attempted. A trach stays in usually past that till a child is one year of age or possibly later to make sure all is healed. This came as a blow. A trach is a tube inserted through the outside of the neck, sending oxygen straight to the lungs and bypassing the mouth and throat.

We don't know whether this will be necessary or not. We'll know when the ENT doctors scope on Thursday. But they ask for permission to do a trach if they need to.

We're pretty numb and tired. We did not see this coming.

I Do Feel All Ways Tired

Monday, February 22, 2010 12:14 AM, EST

"I don't feel no ways tired. I've come too far from where I started from. Nobody told me that the road would be easy, but I don't believe God brought me this far to leave me."

Our choir was singing this when I entered service ten minutes late after speaking to MG's nurse on the phone. She had a rough morning, desatting into the single digits (Our oxygenation levels are at 100, hers on a good day don't dip below 80). The nurse said they would try everything not to reintubate her but MG looked pale and ashen too. This possibility hung over me the entire service and sure enough as I was leaving church, our attending doctor called to tell me after a very difficult few hours, they had reintubated her. The fellow and attending had failed to do it so an ear, nose, and throat specialist was called in with a videoscope in order to guide the tube through the blocked airway below her vocal chords. They have started steriods to help the inflammatio

n of her airways and also given her a transfusion to help her color and her blood carry oxygen better.

The good news is that she is breathing comfortably at very low settings on the vent. The doctor is hopeful that her episodes this weekend were caused more by an obstructed airway than worsening lungs. They will use steriods and possibly laser surgery to treat the inflammation and scar tissue that has developed as a result of having the tube for so long. We hope this works well and we can start again with weaning and extubation in another week.

Nobody told me that the road would be easy, but nobody can prepare you for how hard it really is. I am thankful for the music we sang in church that acknowledged this quality of our trials. It helped that it was the first Sunday of Lent. Or at least, it helped me; Sundays still disagree with Margaret. She'll probably sleep in and skip service as a teenager...

BW

David and James met me at the hospital when they finished at Marble. I posted a photo of him trying to hold her hand. He's given her the dinosaur name, Deinonychus, which means "terrible claw."

When Given a Break, Take It!

Saturday, February 20, 2010 3:25 PM, EST

MG turned 36 weeks gestational age on Friday and 7 weeks after her birth. It has taken me this long to learn that when you are given a break, TAKE IT! Don't fill it with more anxiety of what is to come. (This is a life lesson I hope I remember forever!) We are thankful that MG is still working on the IMV-CPAP. She's been working hard the last two days as the nurses try to get the right fit of the nasal prongs and help her create a seal with nostrils and mouth to more effectively use the pressure and oxygen it is giving her. Her doctor will be in tomorrow and will think about weaning her down from the vent settings she has been on since she was extubated on Wednesday.

W

e've been balancing our relief these past few days with discouraging news from our other hospital. Our friends and parents of Jayden have not received good news. Columbia and Cornell would not take on their case, probably because he was born so young at 22.5weeks before developing his complications. St. Vincent's has agreed to try what they qualified as an experimental drug for a baby his size for 2 weeks. This is all they can do for him. As of yesterday it was working but this weekend is crucial.
Please pray for Jayden and his family.

I went to pray with Carlos on Thursday night when they first received the news and learned of how bad it is gotten at St. Vincent's too. The NICU and hospital felt like a ghost town (granted it was 8:30PM). Only 2 nurses were working for only 4 babies. They reported that 300 workers were laid off and the pediatric floor closed. Because of the nurses' union, our NICU nurses might be replaced by pediatric nurses who've worked there longer. This concerned us for pediatrics is different than the specialized intensive care that premature infants (particularly ours) needs. The anxiety is high in the unit as people, even the doctors, aren't sure of their future in 2 months. We are very concerned for these amazing people who are devoted to the mission of the hospital and care for their patients not just to their employment. It looks like we will be at Columbia uptown for a while as it may take another 1-2months to stabilize MG on CPAP, but we would like for St Vincent's to continue to serve our neighborhood and all of downtown Manhattan and would benefit from returning when MG's care is just about learning to feed and grow on a little bit of additional oxygen. At that point, Columbia urges a transfer out to make room for more acute cases and having her closer to home makes it easier to give her the kind of constant bonding that full-term babies need.

If you could sign this online petiton to help save the hospital we would appreciate it. Only 7500 signed it the first time. This is the link: http://council.nyc.gov/html/action_center/stvincents.shtml

Since the schools had midwinter break, I took James with me to visit yesterday. I let him touch MG's hand. "It's soft." He said he didn't want to sing, "I just want to talk to her." So he told her about the monster on his shirt and how she shouldn't be scared because he'd protect her.

Thank you kindly,
Beth

Big brother meets his sister

Saturday, February 13, 2010 10:25 PM, EST

DAY 48

Six years ago today, David proposed to me in a park near my apartment under a sculpture of a family of acrobats. Little did we know how appropriate the image of two parents juggling several children in the air would be for marriage and raising kids together. Every couple feels the strains of being pulled in different directions and the endless sequence of tag-teaming to get all the domestic responsibil

ities. You don't need one kid in the hospital to feel continuously pulled apart.

Today we celebrated the anniversary of our engagement, as a family. We enjoyed being all together start to finish and not feeling torn. It started with a Diego themed birthday party for James's friend, Miles. Then we ventured uptown on the A train (riding the subway is an adventure in itself to James) to the hospital. This was James's first time to meet his baby sister. Columbia allows siblings and even has babysitting on Saturdays so parents can stay for longer visits in the NICU. James was so excited to meet her. He was very well behaved, speaking quietly so as not to disturb the other babies. He smiled the whole time and asked to hold her and to have her hold his pinky. We told him he couldn't do this yet, but that MG would really like it if he sang to her. He sang the alphabet song, "Twinkle, Twinkle, Little Star" and "Frere Jacques" a dozen times and delighted when she twitched her feet or stretched her hand, signalling she liked it. "I think she likes me," he said.

James was not worried by all the machines, tubes, and wires. He thanked MG's nurse for taking care of her. He looks forward to coming to see her again. We look ahead too with the hope that having James there today renewed in us...more times together as a family of four, especially if it involves singing and James holding Margaret Grace.

BW

Blind Faith or Denial? Or worse, Arrogance?

Monday, February 8, 2010 10:22 PM, EST

DAY 42

With tears of denial and faith (although at this point I’m not sure they aren’t the same thing), I plead "he's a fighter." -- Nicole Conn , film-maker of Little Man the documentary.

Turns out last night's episode was worse than we thought or allowed ourselves to believe. MG required near 100% O2 from 3am to 10am. They were ready to promote her to the oscillating ventilator. She was back down to half that by 4PM, but the Dr that is most familiar with her case since birth said this is her pattern to wean and then crash. Since she's approaching 36 weeks and they've tried all the basics, the doctor explained the looming possibility of a tracheostomy and long-term care if MG couldn't handle extubation. Therefore she urged us to consult with the pulmunary specialist at Columbia, so we will transfer MG as soon as they have a spot for her at New York Presbyterian Hospital, either the Columbia (West side) or Cornell (East side) locations.

Blind faith or denial, this really came at us out of the blue. After talking with other parents of kids with Chronic Lung Disease, it does seem that option we fear is looming is much farther down the line and few have had to go there, so for now we will exponentially multiply our prayers and try not to think about it. Faith, denial, Ambien, whatever works.

BW

Not My First Ride on the NICU Roller Coaster

Saturday, February 6, 2010 10:49 PM, EST

DAY 38

MG is doing well again. She met my brother and sister-in-l

aw today. This was important to me as it was their experience in the NICU that prepared me for my own. That was almost 8 years ago. (My niece is a healthy, happy 7.5 year old now.) I was between my first and second year in seminary and dealing with my own crisis of faith. Around my niece's original due date, I had to write an essay about my faith journey. I am including an excerpt here as my niece and my brother taught me something invaluable about hope then, that I still feel today.

From "Imagining Faith"

In July of 2002, my sister-in-law, Ashley came down with toxemia and had an emergency cesarean. At twenty-eight weeks, she delivered a one pound, three ounce girl. Mary Harriet was put in the NICU, where we hoped she would remain for another three months until her original due date. She barely fit between my brother’s two hands. The nurses in the NICU said she was the smallest one they’d seen. When I was allowed to see Mary Harriet a week later, she had not grown. In fact, she had dropped a few ounces due to the extra strain of being outside the womb and because of digestion and liver difficulties. Her jaundiced skin was see-through; there was no fat to disguise her veins and organs. She looked like a baby bird.

My brother talked to her and introduced me through the small, circular door in her incubator. He showed me how to put my arm through it and cup my hand around her head, not quite touching her, to give her the comfort of embrace without the trauma of touch to her underdeveloped skin. When she heard her father or mother’s voice, she’d turn red and try to cry. She wanted to be near them, to be held, but her skin couldn’t take the sensation. It would take minutes for her breathing to recover once she was upset. Everyday, her small lungs fought for enough oxygen to keep living and growing. She seemed determined to get out of that box and into her mother’s arms. Even though at that point still recovering from what I’d witnessed firsthand on 9/11, I only saw a world full of suffering, Mary Harriet seemed to think there was something on the other side of her box worth the struggle.

One day, I met my brother during his lunch break in the NICU, I asked him what he thought she was thinking in that box all-day. Did she wonder what the point was to life in a box? He chuckled a bit at my suggestion that his daughter was a philosopher and answered that he’s pretty sure her mind is just concentrating on how to take the next breath or get the milk from the feeding tube through that stubborn stomach. Then, he sat down next to her incubator and put his face up to the door and began singing her songs and telling her about all the activities he would do with her when she grew up. I watched speechless as my brother was able to do something I could not do, for I like Mary Harriet, was more concentrated on if she’d ever digest enough milk to help her grow out of the baby bird stage and into a human being. My brother could see past this; he could see her as a young girl he’d take to Tennessee Titans games and that he could teach to dance. He even included me in her life, promising her I’d teach her to read Shakespeare and not take crap from men.

My last visit to the NICU before I left to return to seminary, I was able to hold her. She weighed two and a half pounds, almost as much as the equipment attached to her. My brother sat in the rocking chair beside me, telling me about her progress, about how she’s practically gulping down two bottles a day on top of her feeding tube, and how she will try breast-feeding in the next day or two. He also told me what he expected the next few months of her life to be like, and then described what she’d be like months and years down the road when I’d come back for visits from New York. From the moment she was born, he’d been imagining her life. As I looked down at the life cradled in my hands and saw a fleshy resemblance to him, not just translucent skin wrapped around bone, I believed that each story he told added another ounce and another day to her life. I suppose I want to believe that God provides the hope for imagining…

I returned to seminary ready to learn the stories of the early Church, those they constructed and those they affirmed from people before them, and to discover the stories of people of faith today. I hoped that somewhere in the imagining of these, there was a desire to value life over death. In the figure of Christ, in the act of worship, in the creation of texts and liturgy, Christians, ancient and modern, liberal and evangelical, along with other people of faith try to imagine another world where over the cracks and fissures of this one, everyone belongs. Sure, it’s never absolute, but there is enough power in the hope for it, that some, like my niece, are willing to fight to get out of their box to see what could be imagined.

First Visit to the OR--PDA Ligation

Friday, January 29, 2010 8:27 PM, EST

"Don't stop believing..."

The surgery was a success.

Margaret Grace was wheeled away to the OR at around 2 PM today and was wheeled back to her station (highly "mellowed") at 3:15. The surgeon said that the procedure had been successful--uneventful, even.

Beth and I are, of course, grateful. We were told by many people that this was a "routine" procedure and indeed it turned out to be so. But seeing your little boo put under anaesthesia is not a walk in the park.

What happens now? She's waking up slowly and the doctors said to expect that she will get a bit worse before she gets better. Beth will stay tonight.

The "real" work happens day by day over the next few weeks. Will this help her lungs get healthy enough to get off the ventilator? That's the big question this surgery is meant to address. We don't know yet. With time, we will.

The surgeon was surprised at how large the duct he closed really was--even larger, he said, than he expected based on her echocardiogram. It may, therefore, been having an even more pronounced negative effect on her breathing than we expected.

We still have a long way to go. But this appears to have been a good and important day for Margaret Grace Waltemath Lewicki.

We give thanks and praise to God for the blessing of this day. We thank you for your prayers and good wishes that continue to strengthen our daughter and our family. We give thanks for the First Presbyterian Church of Brooklyn and the Marble Collegiate Church. We give thanks for my mom, Debbie, and Beth's dad, Gary, who are able to be here to care for James. We give thanks to the one who was, at once, both Wounded and Healer.

***

During the surgery, Beth and I stepped downstairs into the beautiful "wintergarden"--a large, indoor atrium--here at the Children's Hosptial. We were drawn by a young man (24?) playing the guitar and singing. We were the only "adults" in his audience--the others were all kids, six of them, all under age 12, towing IVs or sitting in wheelchairs. His voice was beautiful and the scene was, too. All of us, differently wounded and vulnerable, being seranaded--and probably, each of us, transported--by the power of a beautiful human voice. (Beth wanted me to tell you he ended with the request of a 10 year-old, "Don't Stop Believing..."

A Hospital on Life Support

Thursday, January 28, 2010 1:26 AM, EST

DAY 27:
"Our lives begin to end the day we become silent about things that matter"

-Martin Luther King, Jr.

WOW! What a day. Grace is scheduled to have surgery on her PDA on Friday.

AND we found out her hospital is in serious danger of closing in the next 60 days! It's all over the local press and unfortunately it is very real. This is not a "it'll take a year to shut it down. We get great individualized care in this small nursery and it's convenience helps our family life.

We need your help so read the following, sign the petition (http://council.nyc.gov/html/action_center/stvincents.shtml), and show up to the rally tomorrow (either at lunch or after work)!!! If you live out of state, I think you can still sign it or consider becoming a Friend of St. Vincent's at http://www.svcmc.org/newfacility_body.cfm?id=1502. You can easily opt out of receiving emails from them.

Dear Friends,
We urgently need your help to fight against the immanent closure of St. Vincent's Hospital in Greenwich Village. St. Vincent's has been struggling with financial problems, and now the state is threatening to sell it to a private hospital corporation who would shut down the hospital's surgical and acute care services within 60 days.

This issue is personal for us. Our daughter, Margaret Grace, is a patient in the Neonatal Intensive Care Unit--one of the units that would be closed. We will be seriously affected by this.

Why is St. Vincent's worth fighting for? When we experienced a sudden rupture of Beth's amniotic sac at 18 weeks, our doctor (affiliated with another NYC hospital) dropped us from care when we said we would not terminate the pregnancy. Doctors at St. Vincent's took us in and gave us the care and encouragement we needed. The doctors and nurses in the NICU have treated us--and Grace--like family. The NICU at St. Vincent’s takes in dozens of children and parents whom other hospitals have given up on. Three of our NICU mates fall into this category and are thriving. One mother has been pregnant for the last 4 years always delivering days shy of 24 weeks. At the 2 other NYC hospitals she tried, they let her first 3 babies go because of hospital policy not to intervene. Tomorrow she takes home a healthy baby whom St Vincent’s was willing to treat despite being born at 23+weeks. For babies that won’t make it, St Vincent’s offers a Neonatal Hospice program with free counseling, free care by the chief neonatologist, extra support for single mothers, mahogany infant caskets, and free cemetery plots from the Sisters of Charity. As people of faith who believe in the right to choose, we were shocked to find ourselves and other parents who found they weren’t given a choice at other hospitals. We wanted the opportunity to parent our child with integrity through our pregnancy and possibly short life. St Vincent’s was the only place we found would do that.

Beyond our personal investment, St. Vincent's mission matters to this city. Founded on 13th Street in 1849, St. Vincent's was founded to provide care for our community's poorest residents. It's mission continues to affirm that ministry: Saint Vincent Catholic Medical Centers is committed to reflecting God's love by advancing Christ's healing ministry, with Respect, Integrity, Compassion and Excellence to all who come to us in need, especially the poor. In 2008 alone, St. Vincent's provided $46 million in medical care to the homeless and poor of our city. It serves 65,000 in its ER. It has one of the largest HIV/AIDS clinics.

What can you do?

Sign the Petition!

Help St Vincent’s keep fighting to stay open by adding your name to the list of supporters so that New York state officials and those involved in its financial future understand it is important to many people:

http://council.nyc.gov/html/action_center/stvincents.shtml

Forward this email to people who will join their voices to ours!

Show up in person:

Thursday, January 28th, 12 noon at St. Vincent’s Hospital, corner of 7th Ave. and 12th Street for a rally with Borough President Stringer and Council Speaker Quinn

Thursday, January 28th, 5 – 7 PM at Our Lady of Pompeii Church, 25 Carmine St. in Greenwich Village, for a public forum on the hospital’s threatened closure.

We thank you and Grace thanks you!

Revs. Beth Waltemath and David Lewicki

Cyan -- A Dangerous Shade of Blue

Tuesday, January 26, 2010 10:36 PM, EST

DAY 27

"Let the world be filled with grace and let life and love fill your little Grace and help her grow stronger with each breath G-d breathes into her." Lindsay Lombardi from our choir sent this blessing for Grace.

She needs all these: strength, breath, life and love. After a few more turns on the roller coaster, we are finding equilibrium again. I update once a day to spare you some of the ups and downs from hour to hour for I can't imagine willingly participati

ng in these when you don't have to. MG had another episode at 2PM yesterday. She immediately turned purple. But this time the chief neonatologist was there. She determined MG was not intubated. Somehow she had dislodged her own tube. So she was again reintubated. All this took only a minute or two. Her heartrate did not have a chance to drop. Because of this occurance, the neonatologist believes MG's previous episode was also due to the tube coming out and not necessarily her brain forgetting to breath or her lungs abruptly stopping. We may be able to get back our progress sooner than we thought. This is good news. So they restarted her feeds this morning and are weaning her off the ventilator very very slowly again. The episodes did show us how dependent she is on the vent though, even for a second, so we have a long way to go still. The doctor wants her ventilator settings to be better so she can withstand a surgery to close the PDA. The PDA has made no progress in 2 weeks. We had hoped it would close more on its own. The doctor believes she will do better with it closed and get off the ventilator sooner. We are not sure about this procedure and whether it's assumed benefits outweigh the potential drawbacks. The doctor is proposing the procedure for sometime next week. This requires transfer uptown to Columbia-Presbyterian; the transfer can be difficult on their little bodies too (As driving in NYC is on all of us). MG received a new PICC line to get her IV fluids today; they put this in her scalp. She tolerated that very well which suggests she may handle the PDA surgery okay. The concern is that they don't want her oxygen levels to decrease during the surgery so they want her to be less dependent on the vent in order to do it. That's a scary scenario, but she seems to indicate that she would do well despite the fact that her ventilator settings are higher than they'd like for such a procedure. We are still hoping she grows stronger and yes, we still pray the PDA will close on its own as it is supposed to, even though this week's doctor doesn't believe so.

She is alert. Her color is good. Her strength is good. She is growing a little every 2 days. She is over 1100 grams now. While the two episodes were really scary and possibly due to apnea, there is reassurance in the theory that they happened because she was strong and alert enough to dislodge her tube causing this mechanical mishap, rather than physiological danger.

I feel better again today and I turn my lingering worries over to God.

Peace,
Beth

Little Spark, an original poem

Saturday, January 23, 2010 6:12 PM, EST

DAY 24

Grace was having a good day this morning when I visited (David is there now). She has made it over a day on her new settings. Last night, I could tell she was working hard but she seems to have adapted to them somewhat. She still has lower oxygen absorption but hopefully she can get used to working to meet the settings. She is absorbing the milk and fortifier well. They have moved her up to 7ml with fortifier and will add 1ml every 9 hours as long as she tolerates it. She is about 1100grams which is 2lbs 6+oz. She looks better and she is more responsive.

She is pretty alert in the mornings and it is good to make eye contact with her and talk to her then. The greatest joy is when I am able to lightly touch her back and she actually calms down, increases her O2 levels and falls asleep. It is such a joy to feel useful at these times even if it is just coincidence.

I want to share one of the most special inspirations we received. An original verse and homemade collage of a candle from the oldest of friends, Dan Chamberlin.

Little Spark
Struggles to burn
Tended tirelessly by devoted sheperds

Precious ember
Careworn dedication
Whispers of love breath
joyous life

God's Grace
Her fire shall grow
Radiant warmth, love's
gift reflected.

Dan Chamberlin
NY, NY
January 11, 2010

To Be Alive without Breathing

Thursday, January 21, 2010 11:22 PM, EST

Day 22

Grace has been a bit erratic on her oxygen saturation again today. It's really hard to be there when she's having one of her "episodes." Again, the doctors and nurses tell us it's totally normal. But it's just about darn near impossible to sit there calmly as your daughter writhes a little bit and the blinking numbers on the monitor show her oxygen levels dipping precipitiously into dangerous zones.

Beth and I have found that our daily moods have a lot to do with whether Grace is having one of her episodes while we're with her. Beth caught one today. I didn't. She had a rough day. I didn't.

But we are still both admittedly worried. The general mood around Grace's condition seems to be very cautious. Doctors are still encouraging and believe that she'll keep coming down off the ventilator. But every day with the de-sats and the slow progress raises questions about the size, flexibility, and capacity of her lungs.

We've heard lots of stories of little ones being on the ventilator for 8 weeks, 10 weeks... so we know this is not unique. But we also know stories of kids who came off after 2 or 3 days and never had the struggles she's having. In the shadows, lurking behind our anxiety, is the fear that her lungs will not develop along with her body. We talked about that a bit together tonight.

Folks have commented to us how positive we are. But the truth is that we are still very scared. We believe Grace will come home with us. But there are days when our fears take hold and we worry that she won't. It's during these times when your prayers mean the most.

DL

Rev. Dr. Martin Luther King, Jr. said "To be a Christian without prayer is no more possible than to be alive without breathing." Grace is reminding me that sometimes we need assistance with both. ~ BW

Take the First Step by Faith on MLK, JR day

Monday, January 18, 2010 6:15 PM, EST

DAY 19

Thank you to my old friend, Elizabeth Crocker Thomas, for a great inspiration

al quotation for MG's isolette today.

"Take the first step in faith. You don't have to see the whole staircase, just take the first step." Martin Luther King, JR.

I hope all of you had a nice holiday and day of service and remembrance. I also want to share with you this saying by one of the mothers who lost her child to pProm:
"There is no foot too small that it cannot leave an imprint on this world."- unknown

We had a nice family day. David and I took turns visiting MG. She was steady on the vent, oxygenating well. When I arrived she had just done a great thing! She pooped. We've been waiting on pins and needles for this as intestinal infection is a rare but scary thing in the NICU and their guts aren't supposed to work for 3 more months. As the now 25weeker, Jayden's parents, remind us, we are so elated for the smallest things we took for granted with our other children. I'm happy to say Jayden is doing well, so thank you for your extra prayers for him. MG's other roomate, Connor, the 42-weeker who suffered a chemical burn in the lungs from swallowing meconium at birth, is almost ready to go home and a cute, cuddly 10 pounder.

MG woke up for a few minutes and looked right at me. After 4 or more days of sitting silently beside her, I was able to sing to her and offer her my pinky for her to suck (my favorite thing!). It was nice to get the chance to soothe her to sleep! David and I sit for hours hoping to get 5 minutes of this type of interaction.

We spent the afternoon as a family visiting some holiday train exhibits with James before they closed. Things we didn't get to do during the 3 months of bed rest. James is one happy boy. He'll make a great big brother.

Walk by Faith and Not by Sight

Sunday, January 17, 2010 7:45 PM, EST

DAY 18

I'm getting ready to return to church next week and so today's inspiration draws on the imagery of the tradition I serve.

Hymn 399: We Walk by Faith and Not by Sight

We walk by faith and not by sight;
   No gracious words we hear
   From Christ, who spoke as none e'er spoke;
   But we believe Him near.

2.  We may not touch His hands and side,
   Nor follow where He trod;
   But in His promise we rejoice,
   And cry, "My Lord and God!"

3.  Help then, O Lord, our unbelief;
   And may our faith abound
   To call on You when You are near
   And seek where You are found:

4.  That, when our life of faith is done,
   In realms of clearer light
   We may behold You as You are,
   With full and endless sight.

I went to see Grace today and not much has changed with her lungs since yesterday. She was back under the blue light for her jaundice and wearing her full head mask that obscures her face.
Her blood was desaturatin

g a lot due to the apnea sending alarms off every minute or so, therefore I couldn't touch her or speak to her as she needed her rest. I find that the more aware I am of how sensitive to stimulation she is, the more sensitive to the outside I become. She lives in an isolette for a reason. I find that a hospital is its own kind of isolette and so is living on the line between life and death, health and illness. I feel in some ways a delay in relating to the outside world. I feel a desire to say only what is necessary. I feel a need not to be embraced until I can hold her. So it is when hope and grief overwhelm one's senses so that too much talking and embracing can feel more destabilizing than intended. It will be a long time before we can kangaroo with Grace (hold her body to our bare chest). She must be off the ventilator and the CPAP for that. There's no way of telling how long that will be.

I prayed lines from this hymn as I read the postings of missing persons in Haiti on the nytimes.com website. I remembered similar postings on the brick walls of St Vincent's, the hospital that is Grace's home, during the month of September 2001.

"We walk by faith and not by sight...
We cannot touch his hands and side...
Help, then, O Lord, our unbelief..."

For all those who find loved ones and God too remote or missing this week.

"May we behold you as you are,
With full and endless sight."

Songs to sustain us.

Sunday, January 17, 2010 9:14 AM, EST

DAY 17

This post comes a few hours late as yesterday I was too exhausted to write.

Yeste

rday's inspiration was first written by MG's grandmother, Gram, David's mother, "Amazing Grace--How Sweet the Sound."

We are hoping to sing that phrase again soon and can't forget its sweetness in our first week with Grace as she beat the odds and proved she had the anatomy to work with the machines and continuing gestating. Yesterday morning was more drama to an already bad week. Grace's blood had been desaturating a lot Friday night and Saturday morning. When I arrived at the hospital, the nurses were working with her a lot. Her vent was turned up the highest yet, into 70bpm, more than a baby takes and her oxygen was in the 30%. They did an x-ray too. Turns out the tube had moved again and was now too high (on Thursday it was too low and caused a similar scramble). So later that day, MG had stabilized again when they readjusted the tube. She does really well when it is in exactly the right place, but babies move and tubes which are taped to their faces do too.

The doctor told us that since she is so sensitive to the placement of the tube, it shows how reliant she is on ventilation (as opposed to other forms of additional oxygen, CPAP, etc). She told us what we didn't want to hear, that we need to prepare to have Grace on the ventilator for a long time and then CPAP for longer. This puts Grace at great risk of developing Chronic Lung Disease as the ventilator ages the lungs faster. But she needs to breathe in order to live and to grow and she needs to grow in order to get off the ventilator. We knew this was a likely outcome of our time without fluid and of prematurity, but we still hoped for a better outcome, and the severity of her lung condition will only come out over time. We are taking it two weeks at a time now when it comes to her lungs.

In regards to my amazing image of Grace, I imagine her as a two-year-old. James helps in this regard as he is a happy, energetic little boy with his own personality. It is wonderful to see how much more relaxed and confident he is now that I am off bed rest. He loves the extra play time with me and he has a great time with others. (A special thanks to Charlie that took him to the dinosaur museum yesterday while David and I had to work and visit the hospital!) Two-years of age is the technical time to stop adjusting the developmental expectations of preemies and also when they hope children can outgrow their chronic lung problems, particularly those who've needed extra oxygen support at home.

On the train coming back from our annual MLK, JR weekend "All Family Church" retreat yesterday, I sat with an empty seat across from me. I imagined Margaret Grace sitting across from me with blonde curls and a mischevious smile like her brother. This is the carefree child I pray she will become. The one I can call Maisy or May or Maggie or my little Pearl.

For now, I hope to call her "Amazing Grace--how sweet the sound" again when she weans off the ventilator. Music has been a great solace as it fills the silence when we don't know what to whisper to her. Our favorites have been "Breath on Me, Breath of God" and "Over My Head." I was blessed by our choir to receive a voicemail with them singing 3 beautiful verses of "Over My Head." I needed this for my spirit but also for my mind as I had forgotten all but one of the verses when singing to MG. Now she doesn't have to listen to me on repeat!

The Beauty of the Butterfly

Friday, January 15, 2010 9:29 PM, EST

DAY 16

We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty. ~Maya Angelou

This morning before she left, my mother taped two watercolors to MG's isolette. One was of a caterpillar on a green leaf and the other was of the colorful butterfly at the end of Eric Carle's children's book. I add the above quotation to her visual inspiration to express the day (and week) it has been for us with MG. This week we were confronted with the difficult reality of the next few months. After two weeks on the ventilator and a few setbacks (another this morning when her tube moved too low and her CO2 levels rose and lungs deflated a bit), we are realizing that she is not getting off the vent as soon as we'd hoped and had heard possible for others. Our doctor told us we must be prepared for a couple more weeks on the vent and even longer on CPAP before just oxygen. It is hard to watch her struggle, to see the bruises from the retaping, or to witness her levels fall as we did this morning. I realize some of you may tire of riding this roller coaster day by day through this journal, so I do not blame you if you do not subscribe and check only occasionally. A daily update is not always helpful as you may loose sight of the long term. And yes, we have faith that long-term, our Margaret Grace will be home with us and happy...the beautiful butterfly at the end of the story. But that doesn't make each day easy. For us, even in each day there are ups and downs. (Often when people ask me, how she is? I do not know what to say. I think they just want to know if she'll be the butterfly, but right now, we are thick in the sticky strings of the cocoon. It's not always easy to describe the changes it will take to get to the happy outcome. )

It started with a down when we arrived at the hospital and they were readjusting her tube and watching her 02 levels fall.

It started to come up with the news that her PDA was smaller and the left side of her heart more aligned with her right. We can postpone treatement of the smaller opening for now.

It ended with a potential up as we were told she can start trying to eat breastmilk again. They hope she will digest it and begin to grow bigger and stronger. She is 1010grams now, but my babycenter.com updates say she should be 3.5 pounds if she were in the womb.

Let's hope she is as her new paintings suggest she can be...a very hungry caterpillar.

Grace meets her Grandmother, Mimi

From January 12, 2010

Tuesday, January 12, 2010 10:47 PM, EST

Day 13

Not much progress to report in Margaret Grace's medical condition. She is staying put at the higher vent levels while she recuperates from this weekend and while we wait for the 2nd dose of medication to close the ductus.

She did get to meet her grandmother

, Mimi, my mother, tonight. She met grandfather Doc, at 3 days old, when my father returned James to us. They are experienced NICU grandparents as my niece, Mary Harriet, (also named after a strong grandmother) was also born at 28 weeks (weighing only a pound, 3 ounces, but fortunately with mature enough lungs to avoid the ventilator). Upon meeting Margaret Grace, my father said "it's not as scary this time around." This was as good an affirmation as any at that point. And surely, Mary Harriet's miraculous journey has strengthened our faith in God and medicine and prepared us all for this journey.

That said it is not easy to introduce my mother to Grace. When I planned a natural childbirth for James, I asked Mom to wait to come to the hospital until he was born and the screaming was over. I felt a need to protect her from my pain. 12 weeks ago, when we were given 5-10% chances of a live birth and a much greater risk to my health, I felt the conflict of being both a mother and a daughter. On the one hand, I understood a mother's desire to keep her daughter safe on the other I knew the daughter's need to risk truly living. Each week, we looked for signs that our daughter was still growing and fighting to be born to guide us in how to best protect and love her. We knew it would be hard, but if she was up for it, so were we. She always was.
While on bed rest, I reread the myth of Demeter and her daughter, Persephone. Persephone is abducted by Hades, the God of the Underworld, who seeks to marry her. Demeter, goddess of the harvest, searches for her daughter and goes into mourning, leaving the earth scorched until she finds Persephone. Unfortunately, Persephone who had also mourned and fasted, tasted the juice of three pomegranite seeds while in the underworld. This act bound her to live in hell with Hades for three months of the year and only allowed her to live on earth with her mother for the rest.

The myth suggests that Persephone is resilient, finding something to love about her new home and husband, but that Demeter experiences each loss as wrenching as the initial one. When it is time for Persephone to descend and live in the Underworld, Demeter again scorches the earth that before the abduction had been fertile all year round. And all living things experience winter and dying.

As I watched my mother's reflection through the incubator and Grace laboring inside, I realize that our pain can feel so much greater than it usually is, when seen through our mother's eyes.

There will be difficult days ahead, more difficult than even these last three, but this is the path we have chosen, Grace and I. I wish I could go to the underworld to be with her. But I can't, and I can't fully know the reserves of resilience she is creating.

I look forward to the day when the three months are over and Spring comes.

Our Daughter's Name

From January 7, 2010

A note about our daughter's name.

Many of you have asked about her name and what her middle name is. (How can you beat James's "My middle name is Love" line?). "Grace" has always been her middle name. 12 weeks ago when we packed a bag for an emergency admission to the hospital, we included a liturgy for a stillborn child, we also chose a name. "Emily Grace." This was inspired by a poem by Emily Dickinson that my grandmother, Harriet, introduced to me in a letter discussing grief. She used Dickinson's phrase "a harrowing grace," to describe what grief and challenges can do to us as they break up the rigid soil and make fertile ground for new plantings. Receiving grace is not always an easy or calming process. "Emily" was a tribute to the writer, Emily Dickinson, who knew so much of grace and of life and yet lived most her life in a small room as we expected our daughter would live her life only in the womb. We later found out that "Emily" means "laborious" and therefore her name was "Hard-working Grace." She was definitely working hard to stay alive.

As much as the description of "harrowing grace" resonates with me, I am glad that she is crossing over into "Amazing Grace" as so many of you recognized.

Many people helped us to help her beat the odds. We recognize that our ability to give her a shot was strengthened immensely by the support systems of our family and especially, our congregations. We are particularly grateful to my sister, Maggie, who was ready several nights to care for James during our emergency visits to the hospital and was present during the entire labor. (Unfortunately, after her own "harrowing" experience of watching her sister wheeled into the OR with the doctors saying no time for anesthesia and then hearing me scream on the OR table (because they discovered the baby had come out partially breech) and imagining I was being cut open while totally conscious, Maggie may never want to conceive her own children).

We are thrilled and honored to now name our daughter,

MARGARET GRACE...

In honor of the Margaret's who gave her this life we hope she now embraces to the fullest.

For Beth's beloved and late Grandmother Peg Waltemath and her mother Mina Margaret Brewster.

For David's late, beautiful Grandmother Janet Margaret Clarke Widmer.

For Beth's sister, Mary Margaret Lee Waltemath.

For Beth's mentor, Margaret Renkl, who listened and counselled me about losing a pregnancy for hours in those first weeks.

For Margaret Riley, "Aunt Margaret," Maggie's roomate, who also stood vigil for night emergencies and took care of James to ease our burden.

For Margaret Wray, Beth's lifelong friend who visited me on bed rest and sent Insomnia cookies and Kiehl's body products to help me through.

For Margie Martin, Beth's godmother, who with my other incredible godmother, Diana Alden, have always let me know that faith and prayer surround my life even when I was too young or too unsure to be aware of God's presence in it.

"That's a big name for such a small baby," our doctor said today on Margaret Grace's 1 week birthday. Yes, and it is impossible not to make a diminutive for a 2lb baby. So you will hear her nurses call her "Grace" or "Gracie" or "Maggie" or "Margot." We may even one day call her "May" or "Maisy." We hope she has plenty of time to grow into and shape her own name. From the beginning, she has lead the way asking us to be still, believe, wait and see. So we will wait to see exactly whom Margaret Grace hopes to be. (She'll have to shorten it somehow for even this website said her full name had too many characters so we couldn't update the title of this page).

For now, you can keep calling her "Grace," for that is what she is to every heart she has touched.

With Love and Grace,
Beth

(There it is summed up in my children's middle names, my theology in a nutshell. Lucky for them, if we'd left it to David's theology, they might have ended up with monikers like "Justice" and "Righteousness." Either way, they've got a lot of explaining to do on the playground.)

Home is where God is.

From January 9, 2010

I went back to see Grace Friday afternoon. She was back up to 30bpm because of C02 levels in blood. It looks like this weaning is going to take longer than expected. We pray the medication for the PDA will work well to help with the weaning off vent, but that it will not affect her gut or kidneys too much.

They were changing her tube so I was able to get photos not only without blue light but with a better view of her face! This will be good to show James and David (who was feeling ill and therefore not able to go see her yesterday. How hard that will be to get through the days we can't visit if we get sick this season).

These will help us introduce James to the baby. We celebrated her 1 week birthday on Thursday with micro-cupcakes for the nurses and for James. He is now very interested in "the baby" and "Margaret Grace" who gives cupcakes. Hearing him pronounce "Margaret Grace" perfectly somehow makes her presence in the family more real for all of us. He's never seen her, but he has no doubt that she exists, why then should I doubt she will come home?

To get photos of her open eyes while her hood was up, I sang "Over My Head, I hear music in the air." not quite like Bertilla would but I guess MG is partial to mommy's voice because she looked right in my direction and flashed those dark blue baby eyes.

A Failed Extubation

From January 10, 2010 -- a failed extubation.

Sunday, January 10, 2010 3:56 PM, EST

Day 11

I went to see Margaret Grace. Her nurse Nadia said she had a rough night, which was news to me as she had been pretty calm up until 10:30PM when David and I went together to see her. Despite this, she was off the vent and onto CPAP at 31%O2. The weekend neonatalogi

st (not on staff at St.V's) was trying her on that because she fought the tube when they tried to change it this morning. This Dr. said it was probably because she needed a large tube that wouldn't get clogged as easily.

I was amazed to see her off the vent when her main Dr. had told me not to expect progress this weekend. And yet, her chest was heaving and her breaths were more labored and the left side of her chest is larger than her right, it was almost harder to see her take this new step, because I could tell it was hard for her. Here, I'd been waiting for this step since day 1 and when it came, I was worried it would be too much for her. They will check her 02 levels and she may very well be back to the vent tonight. And when the nurse sunctioned her, her O2 saturation dropped as low as 60% (90's% are normal) and took a few moments to come back. The nurse even had to call the doctor over but by then they had started to come back up. The nurse told me to expect this back and forth a lot, that's why they call the NICU a "roller coaster."

My reading about RDS is that the lungs take time and all these machines give them that time to mature and heal. It is interesting to think that all this intervention isn't healing her, her own body in its own time is healing her, but they are easing the way for her to do this. How much more out of my hands as a mother could it be? This is not an easy reality to accept. We are visiting her about 4 times a day, but our visits are not always helpful. Sometimes when we speak to her or touch her, her 02 levels drop to more critical levels and we must stop suddenly. On one hand, her medical team encourages parents to comfort MG with our familiar voices and womb-like touch, but on the other hand, she needs to remain stable in her breathing and our presence can be too much. Since she first persisted against the odds after our water broke at 18 weeks, MG has tested our need as parents to intervene on her behalf and try to make it all safe or predictable. We had to trust her and read the signs that she was still fighting and growing in her own time and as best she could. The nurses described the process of not re-intubating her and trying the CPAP as their responding to her cues too. As she describes it, the roller coaster ride of trying to read these signs and deal with the risks and consequences is about to begin.

The doctor said she still hears a murmur which may indicate the PDA is still open, but we won't know how much until Monday.

I caught up with Jayden's father. They still need our strongest prayers as his right lung collapsed and the left threatened to when they tried to help the right. Jayden is on the oscillating vent but slowly coming down in oxygen percentage. His father was touched by Larry's lyrics on MG's isolette. Everyone say a prayer for Jayden tonight as you sing these words: "Breathe on me, breath of God, fill me with life anew. That I may love as thou dost love and do what thou dost do."

After the hospital, I went to pick up James at church so David could lead a mini-retreat. He was talking to his "church friend" as he called her about his "baby sister in the hospital." Her baby sister was in the nursery with them, so I think he made the association better knowing his friends' have sisters too. When we came home, we passed MG's hospital. He was glad to know where his baby sister was sleeping. When we came home and I opened this site, James said, "I want to see my baby." For some reason, he prefers the "blue light" photos. I think the mask reminds him of the "Superhero Kit" that Acadia gave him as a big brother present. I look forward to the day James Love and Margaret Grace can play WonderTwins like Ward and I did.

With Love and Grace,
Beth

Breathe on Me, Breath of God

From January 7, 2010

Day 8

"Breathe on me, breath of God. Fill me with life anew. That I may love as Thou dost love, and do as Thou wouldst do."

This inspirational quote resides on Grace's isolette. We received it in the mail today from Larry Picard, elder and choir member of FPCBrooklyn.

It describes Grace's day as her breath was better today. They have weaned her down to 25bpm. Normal infant breath is about 50-60bpm's so this means she is doing half the breaths on her own.

She has had 3 feeds so far and we are still seeing how she is responding to them. She needs glycerine to help it all pass through. (Her schedule is 1ml every 12 hours through a small tube threaded down her throat.)

The Physical Therapist resident came to see her and the attending will come see her tomorrow. Her shoulder is less internally rotated today than yesterday as she's been moved into positions that help that. She has a little more flexion too, so she can make more than a right angle up towards her shoulder. They can't start PT until she is "stabilized." So the first concern is getting her off the vent. The doctor said she was pleasantly surprised by the progress Grace made in the last 24 hrs weaning from 40pbm's to 25bpm's. Check out the resources page for a diagram about preemie lungs to get a better visual of what Grace is working with.

The head ultrasound showed her Grade 1 brain bleed was resolving!!!

Keep the prayers coming and the quotes are inspiring us and her.

Peace,
Beth

5 days of life -- A Father's Update

January 4, 2010 --David's update

We keep getting surprised--in a good way--by this girl, Grace.

Beth and I visited for a few hours this afternoon. Good news:

1) The lungs are getting stronger. She's down to 22% oxygen, which is basically the level in the atmosphere, and her blood is getting the oxygen it needs from that level. She's probably not going off the ventilator soon, but it's doing much less work and her body is doing much more on its own.

2) The brain is not bleeding further. This was a huge fear--with small babies, and especially those with high levels of oxygen (like Grace), there is a high risk that the oxygen will cause hemmorhages. Grace has a very low level bleed that she's had since day one, but it's clearing up and there's nothing more. The risks of brain bleeding decline as she gets past the first few days.

3) She's pooping and peeing. As you all surely know, there's nothing like a good poop and pee. Grace is doing both, which just means that she is able to get the waste out of her body. It also means that she can start trying to feed from breast milk.

The doctor's at St. Vincent's are treating her like a miracle. When we met all of them, after Beth's water broke, they didn't think we'd get this far. They're delighted she stayed in the womb so long--every day made a huge difference. And she's responded so well to the care she's received.

Thanks for your love,
DL

Our Daughter Lives!

My daughter, Margaret Grace was born December 31, 2009, 3 months premature. On the day of her birth we were waited to see if she had enough lungs for life that would eventually grow enough so she could breathe on her own. 4.5 months later, that question has been technically answered but we are still waiting to see if it is actually true. We started a blog on a site designed to connect patients and their loved ones. www.caringbridge.org/visit/bethwaltemath. I am posting some selected entries from that site here though they were written way before the dates of the posts on this blog. I hope this history will be helpful as I continue to write about the journey of mothering this special human being.

Here is the post after the first 72 agonizing hours, written by my husband David...

Hi everyone. Thanks for checking in and sorry we're so technophobic. We know that it stinks to be told "check the website" for updates and "the first 72 hours are critical"--and then find NO updates from the family for the first 72 hours.

So... here we are.

Grace is doing well. She's surprising everyone.

Visited last night from 9:30 - 11 PM and she was quietly sleeping most of the time. She stretches her legs and arms now and then and every so often gets flustered about something (perhaps the obnoxious breathing tube down her throat?) but then settles back.

The first big obstacle was lung development. Because she had no amniotic fluid for 11 weeks, lungs were a big question. Would she have them? Would they sustain her? She came into the world not breathing on her own. Docs have been helping her breathe and things are improving. She's on a ventilator which is breathing for her, but she does help out on her own--not enough to leave the ventilator, but she's working on it. The oxygen level in the ventilator started at 100% when she was born. It's now down to 27%, which is great. Air is about 21/22%, so she's close there. Her blood is getting enough oxygen, so the lungs are transferring it to the bloodstream. Very good. X-rays seem to suggest that she has decent-sized lungs, so we're really looking to see whether she can learn to use them.

The other big question mark is her brain. Bleeding on the brain is very common. Initial scans revealed one, "level 1" bleed, which is very minor (a level 4 is the most severe). But... bleeding can develop spontaneously because she's getting a lot of oxygen and her capillaries are so small. So, we do another brain scan Monday to see if there's any more bleeding.

Prematurity is a set of gradually unfolding issues--remember, this girl still needed an additional 11 weeks in the womb to keep developing all of her organs and systems! So, doctors just watch each system to see how they work. It's amazing and delicate, so we're fortunate to be in the care of such gifted physicians and nurses.

Grace has a 24 hour nurse all to herself--she's getting great and loving care.

Beth is doing amazing. Because Grace was born before anyone expected, naturally (sorry honey--another natural birth with no pain medication!), she has a shorter recovery period. She actually walked across the delivery room to see Grace 5 minutes after she was born. Beth is, as you all know, pretty durn tough.

She's busy now every three hours expressing milk. Eventually, we hope Grace will be downing it by the gallon. Meanwhile, our freezer is filling up with beautiful, yellow creamy stuff. Anyone got freezer space to rent? James isn't quite sure what to make of Mommy milking--but he's taking slowly to his role as the "Milk Mate."

OK--that's all for now.

Thanks for your prayers. We are an incredibly blessed family, blessed most by our tough little daughter, Grace.