The tapestry of the life of a medically complex family

Archive for the ‘Twins’ Category

My Foster Adoption Journey

Growing up I lived in a house with 2 brothers and 2 sisters. We were close in age, shared chores, clothing, treehouses and other adventures. Growing up in this family, we learned to share, debate, laugh, entertain ourselves, ride horses and be responsible for ourselves & others. Our parents may not have agreed with every chosen path, but they provided the guidance and support to get us where we wanted to go. As I grew I knew I wanted just such a family- a group of kids who played with each other, fought with each other, resolved differences and became friends & support to each other as adults.

My life went partially as planned: I earned degrees, worked, lived, loved and had my first child. I raised him as a single mother and spent some time looking and waiting for that person to share parenting of future children with… I have yet to find him. Eventually I decided that my desire for that larger family, that group of kids to annoy & delight each other (& me), was not dependent on my other goal of adult companionship. As a child, I had watched Wednesday’s Child on Boston television and KNEW, even then, that I would eventually adopt children from foster care to expand my family. It was time.

After completing my home study, moving & then revising it, I connected with a wonderful adoption worker through MA DCF. She helped me submit my information for consideration for some sibling groups available in MA while I continued to look through online photolistings for children who would somehow speak to my heart. I knew what I wanted: a sibling group of at least 2-3 kids, children younger than my son, children I could love & support and, most importantly to me, children who may be considered “difficult to adopt” because of their race, history or developmental needs. I knew my limitations- there is only one of me- and I let my worker know the conditions that seemed too much for my life and situation.

One day in January 2007, I logged in to the MARE website photolisting (http://mareinc.org/MARE-Online-Photolisting.html ) and, tucked at the bottom of the page, among a group of pictures of sibling groups from MA, I found this picture of 2 infants. Clicking on the picture to enlarge it and find out more, I looked closely at their chubby cheeks and saw the tracheostomy tubes nestled under their chins. Having worked in early childhood special education, including one year in an award-winning program with children who are technology dependent- I recognized the tubes under their chins and knew what this meant about their ability to breathe without medical support. I knew what the need for care meant, what the time commitment could be, what the medical follow-up & advocacy needs might be- and I KNEW that I wanted to be the resource for these children. My social worker was surprised by my interest but knew to trust me in choosing to submit only on children that I thought I could provide for. I was matched with them in February and the week after their first birthday, I went to a disclosure meeting and had an opportunity to meet them.

Trachgirl was the shy one, leery of new people, remembering the hospitals, the doctors, the people who come in and out of her life; she a safe distance during our first meeting. She warmed up later in the visit and played peek-a-boo in my arms on their nursery floor. Trachboy, less aware of a reason to be fearful, lay in my arms, looked up into my face and cemented their places in my heart. As he nestled into me, nuzzling my arm and falling asleep, I knew there was no hope of turning away or turning back- I had found my children. We had found each other.

After regular visits, a bunch of training on their daily & emergency medical care and a solo overnight at their foster home, Trachboy & Trachgirl came home to our house where they joined their older brother then 13.  My oldest adjusted well to the twins’ arrival and continues to amaze me with his capacity to accept his brother and sisters as full-fledged members of our family.

When the twins were 17 months old, a younger sister was born and she joined our family the week her big sibs turned 2. I remember the day her social worker parked her car out front and walked my precious new bundle up the stairs. My youngest lay in my arms and the twins touched her face, held her hand, and brought toys to show her. I scheduled a family photo for that afternoon, knowing full-well I might realize quickly that there was NO WAY I was ever going to get out of the house again! The pictures were a big success, all four kids looking intently at the camera, a smile from the teen at how crazy his Mom truly was. For some time, this is the completion of our family. One day there may be others who join, related or not, but for now the craziness feels full, real, rewarding.

It has been a journey, laden with challenges and celebrations, hospitalizations, surgeries and periods of wellness & activity. It has been worth it.  It has proven the greatest and most thrilling adventure of my life. I hope that my children will have the opportunity to learn the many lessons I was taught living in a large family. I wish them all the success, friendship, strength and happiness that I have had the fortune to have experienced. I encourage everyone who can, who has the resources, the energy, the love for children and the desire for a strong family to consider what they may have to offer a child from foster care, who may have no one else.

Category:

adoption, foster children, kids, Medicine, Momma making, Preemie, Special Needs, Trach, Twins

LTR- with Rib Graft Poem Foolery

When your subglottis is narrowed

and various trachea parts are bowed,

a reconstruction’s what you need

an ENT can do the deed.

He first will harvest one mid-rib

And cartilage he’ll have for gib

He’ll graft the narrows, do his best

and then you’ll need some mighty rest.

A day sedated, maybe two,

Until the nurse awakens you.

The stent he placed will take a ride

and in your trachea reside-

for a week or weeks, it will depend,

you’ll hunker down until the end.

Bronchoscopy for its removal

Repeat in a week to assess the upheaval.

The goal is air will better flow

just as it is supposed to go…

Perhaps dilation will be next

until you pass his airway test.

Then with healing finally comes

your voice escaping cross your gums!

Celebration, joy, elation!

Worthy all that consternation.

LTR with rib graft cures

some SGS in trach of yours!

Category:

kids, Medicine, poem, Preemie, Special Needs, Trach, Twins

Riches

Saturday night I had a conversation with a person I knew in high school. She is reaching out and connecting after a flop of a reunion resulted in a 3-person turn out for appetizers and a beer! She talked with me about her life now, the challenges and wonderful things that have happened for her over the years, along with how amazing her daughter is. She feels that her daughter is kinder, gentler, more compassionate than she herself was growing up. She talked about how her daughter regularly asks her to travel to my facebook page to see updates or photos of my children, how she fields questions about our lives, health and how adoption works or our family came to be. She told me her daughter asked about whether I was rich and she said she explained to her that I was not. I understand that she meant with regard to monetary riches but I believe I am one of the richest women in the world.

Each day I have the privilege of watching the growth and development of my 4 children. I am there to wipe tears, celebrate accomplishments and trouble-shoot oncoming challenges. I do, as people say, “have my hands full” but each day my heart is also brimming. The struggles and challenges we face each day do not go unnoticed by me, but each day my children are well enough to stay at home, to get out of bed, to play, fight and give me a hard time- those experiences enrich my life, make me more aware of my riches than any king or dignitary from any land.

My children have brought me along on their protracted and arduous journey. They have crossed the Himalayas of childhood experience and we live at the base of yet another mountain range, but their existence has enriched my life beyond the measure of all journeys thus far. As a family, we are rich in our support of each other as we address the “richness” of challenges, breathing treatments and medical appointments. While we persist in reducing the richness of hospital visits, emergency room trips and ambulance rides, we thank the universe for providing the richness of being together, learning and growing. As a mother, however uncertain the future, each day I am rich in love, in laughter and in the most valuable of all commodities: time.

Category:

Big Bro, foster children, Judgement, kids, Momma making, Preemie, Special Needs, Trach, Twins

Reconstruction with Rib Graft, Part 4

The events of the NG experiment weighed heavily on me the next day. When I spoke with the fellow, he agreed that starting slow “listening to the Momma” might have been a better idea. He told me we could try it again and run it slower or have her stick it out for 2 more days until she could try to pass a swallow the day after the stent was out. I opted to wait. She had already made it nearly a week, 2 more days would not be much longer.

By this time Trachboy had begun to feel better and was playing more actively in his crib. He was taking all fluids through his GTube or by mouth so he no longer had an IV. Sometimes I would place them together in Trachgirl’s crib so they could snuggle together or play with small toys. Fortunately we got through the next few days without incident. Trachgirl’s follow-up x-rays did not show progressive pneumonia from the aspiration and she handled the removal of the stent well.

Her swallow study the next day cleared her for nectar thick liquids and she happily took her first bottle in over a week while in my arms. Things were definitely looking up. The hospital scheduled us to leave the next day and visitors from the Dept. of Social Services & our Community Medical Alliance team spent part of the afternoon with the kids and I. It was during this visit that we learned there was a new baby and tried to wrap our head around what that might mean to us as a family.

When we headed home, Trachboy went in the car with a nurse and Nana while Trachgirl & I rode medical transport to ensure a safe trip. The joy and ear-to-ear smiles on our arrival back to the home playroom were priceless.

Within a couple days I returned to the hospital for Trachboy’s next follow-up bronk. The docs were thrilled that the repair had held. He did not require any dilation of the area in any follow-up bronk post-op.

Trachgirl was another story altogether. The ENT fellow had explained to me that the usual course post-op was that things look amazing on bronk #1, then bronk#2 is usually when they scratch their head and wonder why they put in all the effort. This was the case for Trachgirl whose airway had swollen back to the narrow pinhole she had had pre-op. With balloon dilation, they were able to open up her airway to a better size and she returned weekly for another month to continue the process of opening the subglottis. The appointments were then spread out to every two weeks and dilation continued until about 2.5 months later when they determined they had gotten the result they were going to get with her.

Several months later, my house became a home of sounds and giggles, words and some phrases. By just before their second birthday, both twins had found their voice and begun to use phrases with their signs to communicate. Since that time, communication has been mostly by voice- quieter than most young children their age, but quite a miraculous blessing considering their start.

Category:

foster children, kids, Medicine, Nurse, Preemie, Special Needs, Trach, Twins, Uncategorized

Reconstruction with Rib Graft, Part 3

The nurses at the Eye & Ear are wonderful and caring. They worked hard to support my kids through the pain and discomfort of their recovery from airway reconstruction. They checked in on us frequently and, between the two beds, they were kept busy with IV adjusting or replacement and drain/wound care.

While they were terrific and friendly, my children responded with terror at each new person who walked through the door. They crawled to the side of their cribs where I was closest and tears flowed freely. They would wriggle frantically, crying soundlessly, trying to climb through the bars into my arms. I spent nearly every waking moment seated between their cribs, holding and rocking one or both of them. For each neb or procedure, they would sit in their crib, reaching immediately back to me as soon as it was over. After 3 days of fielding questions about whether they were “always this difficult” from a support staff member at the hospital, my insurance company approved skilled visits by the nurses who worked in my home. The relief in having that second set of familiar hands, a person who could spell me so I could SHOWER or eat a meal- which I had to do outside the room or during their sleep because Trachgirl had not been cleared for anything by mouth since she failed her swallow.

Trachboy’s first bronk post-op got the “thumbs up, A-ok” seal of approval and the stent was removed. It had been a week since we had tried anything by mouth for him so I worked at re-introducing the bottle in a chair outside our room while a nurse spent time with Trachgirl, 3 days into her post-op “fast”. Trachgirl signed milk at least 100 times per day, at the arrival of each person, because her hunger now exceeded her fear. For the next 3 days she signed madly, cried silently, batted eyes at each and every arrival, BEGGING to be given something, anything by mouth. On day 5, after much urging from me, the docs finally ran a blood panel. A resident said her bloodwork was “normal” to which I replied: “Geez. That IS gonna save me some money.” implying the no food option being equal to the food option seemed a “win-win” from my perspective… <sarcasm>

The fellow came in afterward and went over the bloodwork with me, told me about a change in her IV fluid make-up to balance some things out, and talked about putting in an Nasogastric-tube (NG) to give her some nutrition. I agreed to the NG, knowing she would have to be confined to her crib during feeding and that “welcome sleeves” would need to be applied to keep her from reaching her face and pulling the tube out, but hoping that the filling of her belly would help her to heal faster and be happier. When the nurse arrived with the feeding, she put it on a bolus rate and told me not to worry about it being too fast- after all, she was starving hungry and a full belly would only “feel good”. The feed began at about 10:45p, just before shift change, and the nurse left soon thereafter to report-out to the nurse who would be taking over for the night. Trachgirl sat in the middle of her crib looking like a beaten and defeated child: surgical scars and adhesive sutures, NG tube taped in a trail across her face & head, “welcome sleeve” arm braces to prevent her from getting her hands on her new “feed equipment”. She leaned back on the inclined crib surface and at about 10 after the hour, she began to vomit.

Trachgirl immediately aspirated the formula through the cleft from the stent, at which point she crashed, sats plummeting, alarms sounding, nurse running to our room. As her sats dipped to 68%, Trachgirl blacked out into the pool of her own vomit and I continued suctioning while the nurse ran to the nurse station to make the STAT call for the doc to get to the floor. Her heart rate dipped low, the docs arrived and re-assessed her as she returned to more stability. After a consult with our ENT, the resident removed the NG, radiology came to the bedside for a lung xray, and we waited for her EKG to be completed to be sure her heart rhythm had returned to normal. Sleep that night was a non-option for me. I spent the rest of the night seated next to her crib, holding her upright in my lap.

Category:

"the Ugly", Feeding, foster children, kids, Medicine, Preemie, Special Needs, Trach, Twins

Not Asked For

I know you did not ask for this
family arrival, challenged, challenging.
I know you could not say yes
when asked to do more than you can.
THEY did not ask for this
Abuse, separation, alienation from birth
They did not ask for their challenges
to be a burden by birth and adoption
I asked for this
to welcome, to love, to hold
I asked for this
believing in their potential-
in their right to the support needed to achieve it.
I will continue to ask
continue to work toward their successes
continue to strive for their acceptance in this world that did not ask for them.

Category:

arrivals, foster children, Momma making, poem, Preemie, Special Needs, Trach, Twins