The Search for Meaning | Chapter 16

The Search for Meaning | Chapter 16

Fragile | Chapter 16

Fragile | Chapter 16
This is an interview I did with another parent of a medically fragile child. The birth of his son and the medical complications that upended their lives sent Hamilton Cain looking for themes and patterns in his childhood and adulthood from which to find strength and meaning. He asks hard questions, takes on harder daily caregiving routines, but doesn't settle for the easy answers and therefore ends up with the most beautiful ones.

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