The tapestry of the life of a medically complex family

Archive for the ‘Momma making’ Category

A Saturday in the Complex Medical Needs’ Family Life

As a Mom to 3 preemies, all under the age of 5, I have a lot of medical treatments to do in addition to caring for our home. People ask me how I do it. I have no idea how not to. I am the Mom, the only parent, the grown-up in a sea of small dependent faces. Like every other caring Mom in the world, I do.

Our typical weekend day begins with a “moment of silence”- that’s what I call it when I shut off all the oximeters and the 2 mist compressors that hiss and rumble all night long. We all pause for a moment, sighing relief that we have made it through another night being home together. Then the work begins.

I start Tav’s hypertonic saline neb*, then move to begin Adrien’s. I usually fold the pull-out couch and take off Keva’s oximeter probe so she can get to the bathroom before her first neb of the day. When we come back, I sometimes have had the time to start my pot of coffee and I listen to it brew as I put Keva’s fish mask over her head and begin her pulmicort neb. Usually by this time the twins’ saline nebs are complete and they are ready to move on to pulmicort nebs next. While these 3 nebs run, I remove the tape and oximeter probes from each of the twins. We’ve been up at least 40 minutes by the time we are ready to remove the trach masks, put on HMEs and head to toilet the twins before the kids’ first formula mealtime of the day.

During toileting I make up a cup of peanut butter milk for Tav and almond milk with GI meds for the girls.  When I get them all to the table, I set the Time Timer for Tav so he might finish drinking in a reasonable time to get a sticker on his behavior chart. While they drink I usually clean up dishes from the night before if there was no nurse, or make a new pile of dishes by crafting a grain-free breakfast meal. 99.9% of the time the girls finish drinking first and they wait for Tav to finish drinking. Sometimes the girls eat breakfast right after milk, other times they wait for Tav to be done and for a first round of play to end before eating.

After their morning fluids, I try to let the kids play together for a while before beginning the bathing & dressing routine- if we decide to get out of pajamas! Then I take each twin and do trach care- cleaning carefully around each trach and replacing trach ties, snugly enough to prevent it from coming out and loosely enough not to press the trach hard against their neck. When trach ties are done, I usually listen to lung sounds to get a baseline for the day and then begin Chest Physiotherapy (CPT). I do this one child at a time and a full cycle can take more than 20 minutes per twin, about 10 for Keva when needed. The other kids generally play during this time and it is frequent that they play “medical treatment” on their dolls as their brother or sister is being “worked over”.

By the time we finish with all this, it is nearing mid-day and play time will continue or this will be when we take the time to go outdoors for some fresh air. I will admit that it is infrequent that I get the kids outside on a weekend day. Between inclement weather, additional PRN [as needed] neb treatments, trying to vacuum or get a load of laundry in, our mornings are frequently shot before we even have a chance to think about going outside. This is one area where I want to do much better heading into “spring”. Our lives are so limited by the numerous medical treatments, appointments, weather that is too wet, too cold or too hot [ >70deg F], my kids have an existence that is too much about being in the “nursery playroom” or car. I am committed to trying to make it outdoors each and every day there is weather & a schedule allowing us to do so- wish me luck!

Around 12:30 or 12:45, we have lunch. Lunch is almost exclusively SCD [Specific Carbohydrate Diet/ lactose-free] homemade yogurt unless I feel up to making some grain-free bread for sandwiches. Adrien & Keva love days when I get the bread made and they get to have a peanut butter and honey sandwich instead of the yogurt. Because Tav is so feeding impaired, lunch can last anywhere from 20 minutes to well over 90 minutes if we try to get him to eat the 6oz. cup by himself. Frequently, after 20 minutes, we spoon feed him much like a young infant. Lunch can result in gagging, vomiting, tantrums, crying, clean-up, neb treatments and/or suction sessions before it ends. Sometimes, but not always, we get to finish quickly enough to play or draw/write before it is again time to have peanut butter formula and almond milk. The girls typically do a great job with lunch and finish their milk before doing quiet table top activities while I encourage Tav to finish. It is a rare day when we get more into Tav than the yogurt, and even more rare to get the 4 ounces of peanut butter milk in afterward.

After lunch, Keva really still needs a nap and the twins need to have time on humidity before we continue our day. I tuck Keva in upstairs so she gets her rest until about 4pm. I attach trach masks, turn back on the hissing compressors for the twins & set them up with table-top activities in the nursery playroom. 90 minutes is a long time sitting but they really need the moisture or we spend the rest of the day doing neb treatments nearly hourly for Tavish. At some point, I try to get in another session of CPT for Tavish & Adrien during this time.

If you’ve read this far, you’re now to about 4pm, when we remove the mist and place HMEs for snack time. Tavish again has only peanut butter formula right now but he has begun to ask for a single baby bite of a food item on occasion- true cause for celebration. The girls have more almond milk and a Larabar or some fruit with peanut butter for snack. The SCD is tough with regard to getting carbohydrates into the kids- which they need for quick energy- so we really try to focus on carbs at this time. With the Time Timer again set, the girls typically finish their milk and food and get down to play again. Tavish occasionally finishes his milk “on time” and we try to plan a rotation from free-play activities the kids may do individually to group activities like puzzles, reading stories or games we play all together.  Often this play time is when I get a chance to sit down and look at facebook, draft the nursing schedule or blog- but sometimes these activities wait until after bed for the fearsome 3some!

Whatever the play activities, we work to wrap them up by 6pm to head into the kitchen again for dinner. Sometimes it is cooking that begins, other times we re-heat and begin eating right at 6. I try to keep us on time for getting to brushing teeth by 7pm but often we are at 730 or 8 by the time we are heading back in to begin getting ready for bed. Bedtime includes slathering my kids’ dry skin in aquaphor or other skin creams for what ails them, dressing in clean pajamas, and getting evening neb treatments started. A typical night is another 5 nebs before tucking the “triple threat” into their beds and singing the “Love you Forever” song to each of them.

As they drift off to sleep, I begin cleaning the neb kits to ready them for the next needed neb sometime during the night or the next morning. I check them every 20 minutes to a half hour, listening constantly for a change in breathing or sounds indicating discomfort or difficulty managing secretions. A cough usually needs to be checked out,  wretching needs to be addressed before it becomes a bedding change or aspiration and “stop talking” needs to be said several times. I place oximeter probes on all kids before I settle down to try to watch some intermittent TV or use the computer. I check them throughout the evening in about half hour intervals, being sure the probes are still registering Heart Rates (HR) and Oxygen (O2) levels. I check to see that trachs are secure, trach mist masks are placed appropriately and kids are positioned to minimize occlusion of their trach tubes or obstructive apnea events for my youngest. If any one of the kids has oxygen desaturations, I weave oxygen tubing through furniture legs and behind shelving from the tank to their crib to link it into the mist circuit.

At some point after 11p, I consider heading to bed. I pull out the couch cushions and open the cot. Add pillows, my flashlight, glasses and blanket and I lie down to begin my series of naps between getting up to check my sleeping “airway patients”. Some time between 6 and 8am the next day, I get out of bed to begin the routine all over again.

This post includes none of the work to clean medical equipment between uses, cleaning hands between activities or children, preparing food, feeding dogs or cleaning up- or bathroom breaks! It includes none of the hugs, the chatting, the Mom-child interaction or daily housekeeping. It includes little reference to the average of 5 additional “as needed” neb treatments that take 15-20 minutes to prep and give. When I look at it all in a blog post, I too wonder how it all gets done. Mostly, I just do, and try not to think about it.

* ‘neb’ is short for a nebulizer treatment of any medication or saline to help clear, open up, stop bronchospasms or clear inflammation from the lungs.

Fancy Friday

Family is about sharing traditions. Parents bring traditions with them from their childhood home, like Christmas stockings, when Santa arrives & the way birthdays are celebrated. As families change, become larger, spend more time in their own nucleus, traditions uniquely their own develop from day-to-day activities or new needs of their nuclear family members.

When I was a parent “the first time”, traditions included Christmas stockings, an empty tree base until Santa came overnight, celebrations of Hanukkah & Shabbat – singing Hebrew blessings at candle light and enjoying dinner & playtime with only these candles to brighten our winter evenings. Saturday morning breakfast out at a local diner- even as we moved across the country and back- and batting cages, Little League, Cub Scouts… riding bikes together. Sometimes we read Harry Potter in the evenings, sitting together on the couch and taking turns reading the paragraphs or pages to each other. My oldest and I share a love of literature and adventure stories which includes sharing books back and forth over MANY of the last 12 years he has been a reader.

When the twins arrived, with oxygen tanks and open airways to their lungs, traditions changed to more home-based activities- with fewer open flames! We have the occasional Shabbat inspired dinner, but with nursing on Friday and so many feeding issues, well, one could see how that might no longer apply as a time to celebrate. We have changed family traditions as the grouping of people changes, or as we get interesting hand-me-downs!

Even before use of their upper airway for sound, our house has followed the score of what I call “My Life as a Musical”. We have wake-up songs I sing to the kids, songs for washing hands, name songs unique to each kid in the house, songs we sing to comfort or rev up, the complete score of the “Wizard of Oz” musical my sister was in as a child, selections from other musicals. My favorites are our bedtime songs including “It’s the most wonderful time of the day” and the “Love you Forever” song I sing each and every night to each kid individually- right before they sing it back to me. Without our good night musical transitions, my kids are restless, sometimes agitated, and may stay awake hours trying to settle in. Even when I go to the hospital for an overnight with one, I have to call home and, regardless of audience (e.g., docs, nurses), sing to the other(s) who are readying for bed there.

All scheduled nebs are done together as a group, twins in cribs, youngest sitting upright across from them. I dress the twins in similar colors, and include Youngest in the grouping with either a similar “style” (e.g., her signature green Hanna dress when they wear blue & yellow), or in a similar color pallet when we go out. It’s a trick used by other families to keep track of their kids in public places, I think it emphasizes the twins identity as such, without making them look completely the same, and differentiates my youngest as “belonging” but not being one of the “twin unit”- altho, believe me, “are they triplets?” is as popular as the ever inappropriate “where did they come from/ you get them?”. Anyway, sometimes similar colors come from my choosing the outfits in the same mood, just like when you go to your own closet!

The more unusual of our traditions is the one we celebrate many Fridays. A couple years ago, the kids got “Hand-me-down” clothing from their biological older sisters and cousins. Their biological family are “dress up for church” people and the girls inherited these GORGEOUS tulle and velvet or embroidered dresses that are MUCH too fancy for anything we could ever dream of doing as a family in our quest to avoid germ exposure and stay healthy! SO, in order to give my girls access to these beautiful dresses and use the hand-me-downs so lovingly cared for before we got them, we began using Friday as a “reason” to dress up.

We call these days “Fancy Friday” and the girls wear extravagant-looking dresses with tights while Trachboy dons dressier button-downs and sometimes white pants. We go through our day as we would otherwise- heading to doc appts., running errands, riding bikes along the Riverwalk, playing on the deck or slide, or staying in and hunkering down if there’s not reason to go out and the weather is not agreeable to outdoor play. It is one of the more unique traditions that gets lots of comments and raised eyebrows- pink tulle tiers below a black velvet bodice are a bit dressy for an airway appt… The kids love it. It’s quirky and something that defines our family unit as uniquely US. What are traditions unique to your family?

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.

Thankful 2010

As we cruise through the first week of November and the challenges and concerns about health for the trifecta and the round-out of the fantastic foursome… I want to take a moment to celebrate the things for which I am MOST thankful.

I have 4 beautiful kids who, regardless of their medical needs and challenges, I love for the sunshine and joy they bring to me. My eldest has struggled with being too young to manage the stress of a first year of college at this time in his life. Thankfully he had the strength to talk about it and eventually withdraw before increasing debt without passing coursework became the outcome. He is a child who lets me know that I can succeed in parenting. He frequently shows the compassionate and nurturing side he has developed over the years when he sits with his young siblings and talks with them about their interests or gives them “pony back rides” in the playroom. I achieved “random hug” status last week by completing the simple task of remembering his Lucky Charms when I went to the grocery store. These tender moments remind me that his wonderful self is still in there, surfacing and diving as he figures out how to navigate his transition to adulthood.

With the twins, I am thankful for their continued resilience, for their seeming increased ability to ward off illness. We have had multiple doctor visits in the local children’s hospital and have been able to avoid contracting the usual “inpatient” events of years past. With my daughter, she has developed a bond with her little sister that involves daily interactive play and nurturing encouragement. She is more likely to be cautious around her trach and has developed MANY pre-reading and early math strengths over the last year. My son is gaining weight (finally!) and his physical and language/communication abilities have improved significantly. He regularly tells his sisters, brother and I that he loves us, participates much more in group play and has begun to be able to mediate his environment better using language over physical means <– oops! SPED speak for less hitting & grabbing, more asking/telling!

My youngest continues to have her physical and medical challenges of unknown diagnoses but she lives her life with sunshine and much humor. Her personality has really grown SO much this year- she is regularly saying goofy/funny things and bobbing her head back and forth like the comedian she is! She has been mostly healthy this year as well and we have testing scheduled soon which will hopefully answer a few of the ongoing nagging questions.

I am thankful for my own health and strength to do all that I do- I DO wish I could do it all a little more calmly at times, but glad I still get it done. I am SO thankful for the healthy and skilled team of nurses we have had over the last year: Alicia, Bass, Diane, Meghan & Sue are resources which have kept my kids on the path of good health without an inpatient stay in 2010 thus far. (Do NOT tell the fates…) The skilled and caring team of doctors that support our efforts also cannot be over-appreciated. I have been blessed SO much by their thorough and thoughtful treatment of ongoing challenges, and quick response to emerging issues so they do not progress to major complications. Our doctors are the best!

It has been another long year but I am thankful for all the blessings that have come along! HUGS to you & yours!

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.

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.

A little surprise…

Soon after the twins’ arrival they needed airway surgery to open up the area under their vocal cords to allow air to pass over them. The amount of scar tissue that was present would prevent them from being intubated from above in the event their trach failed and their ENT thought it was important to have the surgery about a month after their transition home. I’ll write more about that (and other surgeries!) later because this post has another star: my youngest! [so far]

After the surgery, while the twins were inpatient recovering and awaiting the follow-up procedures needed before leaving for home, I had a visit from the twins social worker. We talked about how well the twins had bonded to me, how their birth family wanted to get a chance to visit in the fall, AND that their bio-mo was again in labor… My kids were 17 months old, their next older sister was 28 months old, and another child was being brought into the world through the same cocaine-tainted uterus that wreaked havoc upon my twins. Immediately I asked if the child was a girl or a boy… and followed with: “it really doesn’t matter but hopefully this is it for a while because I only have so many bedrooms.” With that comment uttered, I began the process of welcoming the fourth of my children into my home. She was a bit better off than the twins gestationally; her delivery occurred in the 33rd week of the pregnancy, making her a “giant” at 4lbs. 4oz.

The Department quoted concerns that my twins were too needy to handle another child- I sent them a slideshow of pictures of our walks along the river, trips to my sister’s, playing with toys in the playroom. The Department has RULES [unwritten] about not placing another child in a family that has children under the age of 2- they delayed matching my new homestudy until the week of my twins’ second birthday. The Department conceded that it would be best to place her with her older sister and brother. She was FINALLY going to get to come home!

My youngest was a tiny babe when I first met her, March 10, 2008, 1 year and 1 day from my meeting of the twins! She was cuddly and snuggly and 8 months old, living in a foster home near where her bio-mo was last seen. Her loving foster parents cried when I first came, knowing they would soon be sending her to live with her forever family. Although we do not speak the same language, I understood the tears were shed for the sadness they felt in knowing they would miss her, as well as to share the happiness of her finding a home where she could grow up with her older siblings. Over the next week, I visited  her daily and brought her brothers and sister into town to meet her and get Easter Bunny pictures taken.

8 days later, the social worker parked her car out front and walked my precious new bundle up the stairs. 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.