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.