This post is intended for informational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment.

Poop is a daily topic of conversation in our home. After three years of being in the trenches, I can tell you more than you’d probably ever want to know about it, but it hasn’t always been this way.

When we were reviewing our son’s file I was completely clueless about his special need and had never heard the term bowel management. What we did know was that there was a better than average chance that our son would need some type of bowel management in order to empty his colon regularly and achieve what is known as social continence. I know from experience that the words bowel management can be a bit scary and overwhelming for prospective and newly adoptive parents. With this post I hope to help those who are currently navigating this path and those reviewing files have a better understanding of what bowel management is.

While the reasons a child may need a bowel management program are numerous and varied, the good news is that many successful treatment options exist and when used within a regular bowel management program will allow most children to achieve social continence.

For the purpose of this post I have divided the bowel management protocols into three categories: laxatives, rectal enemas, and surgical.

The first option for bowel management is laxatives. An individualized bowel management program might involve one or a combination of these medications. Commonly used laxatives for bowel management include:

• Stimulant laxatives: Stimulate the nerves in the colon and rectum which causes the muscles in the wall of the bowel to squeeze or contract and move the stool. Examples: sennosides (Senokot, ExLax) and bisacodyl(Dulcolax)
• Stool softeners: Help mix fluid into the stool to soften it. Example: docusate (Colace)
• Osmotic laxatives: Works by increasing the amount of fluid in the large bowel by drawing fluid into it causing the large intestine to hold more fluid which stimulates the bowels. Examples: polyethylene glycol (Miralax), magnesium hydroxide (Milk of Magnesia)
• Bulk-forming: Add “soluble” fiber to the stool causing the stool to absorb more water, which creates larger, softer stools that help trigger the bowel to contract. Examples: psyllium (Metamucil) and methylcellulose (Citrucel)

An enema is a procedure in which a liquid solution is inserted into the rectum to expel its contents.

• Fleet enemas: A brand of disposable, small-volume enemas that come in several forms. Fleet saline enemas work by drawing water into the colon to soften the stool to help produce a bowel movement. Fleet mineral oil enemas are a lubricant laxative that coats the fecal contents to prevent water from being absorbed out of the stool. Fleet bisacodyl enemas work by directly stimulating the intestine to increase the rhythmic action that pushes feces through the bowel.
• Suppositories: Similar to enemas in that they are inserted into the rectum, but differ in that they are small capsules or applicators containing either glycerin or bisacodyl which work to promote a bowel movement.
• Large volume balloon enemas: Consist of a preset large amount of either water or saline along with a certain amount of irritant (glycerin, castile soap, baby soap) that causes the colon to contract and evacuate the stool. Large volume balloon enemas are administered using a gravity/kangaroo feeding bag and foley catheter with balloon. The bag is hung from an elevated position and the fluid is placed in the bag. The catheter is connected to the bag tubing and is inserted into the rectum and the balloon inflated. The valve on the bag tubing is then opened allowing the fluid to slowly flow into the colon. The inflated balloon acts like a plug and keeps the fluid from leaking back out. When it is time to release the fluid the balloon is deflated and the fluid and stool are expelled. (administration video)
• Large volume cone enemas: Similar to the balloon enemas in that they consist of a fluid bag, tubing, a large volume of saline or water, and an irritant. The difference is instead of a balloon catheter, a plastic cone shaped tip is used. The cone is inserted into the rectum and the fluid permitted to flow in. The cone acts as a stopper to keep the fluid in the colon until all of the solution has flowed in, at which point the cone is removed and the fluid and stool are evacuated. (administration video)
• Peristeen anal irrigation system is similar to large volume balloon enemas in that it uses a large volume of fluid, a specialized catheter with a balloon, tubing, and a bag. The Peristeen does not however rely on gravity to introduce the fluid into the colon and instead uses a pump system. Unlike the other two types of large volume enemas the Peristeen system is designed to work with water alone removing the need for added irritants. (Peristeen informational video)

Malone Antegrade Continence Enema (MACE, Malone, ACE, appendicostomy)

An appendicostomy, or Malone, is just another way of administering an enema that is done for children who need an enema every day to stay free from stool accidents and. A Malone procedure (MACE), is a surgery that makes a pathway from the colon to the belly button or other location on the abdomen. With the Malone procedure, the enema is given from the beginning or top of the colon via the created pathway, instead of up trough the rectum, and stool is evacuated from the rectum with the enema fluid. This type of flush is essentially from the top down, rather than bottom up.

Sacral Nerve Stimulation (SNS, or Sacral Neuromodulation)

Sacral nerve stimulation is a promising new therapeutic modality for pediatric urinary and fecal incontinence, and chronic constipation in children when other treatments have been unsuccessful. The technology can be compared to a pacemaker for the heart, but instead, it provides stimulation to the anal canal area, lower part of the colon, and the bladder.

In addition to helping children with urinary and fecal incontinence, and chronic constipation, sacral nerve stimulation has proven successful in some children with anorectal malformations, Hirschsprung disease and certain forms of spina bifida (source: Nationwide Children’s Hospital).

Nationwide Children’s Hospital (Columbus, OH)
Children’s Hospital Colorado (Denver, CO)
Seattle Children’s Hospital (Seattle, WA)
Boston Children’s Hospital (Boston, MA)
Cincinnati Children’s Hospital (Cincinnati, OH)

The post The Scoop on Poop: All About Bowel Management appeared first on No Hands But Ours.

The term special needs can sound scary. But it doesn’t have to stay that way. Our goal at NHBO is to equip and inform parents – replacing fear with knowledge – as they navigate the beginning stages of special needs adoption. And then encourage and support those home with their special needs kiddos.

We do much of this through our Family Stories. In addition to our regular content, each month (except January) we feature Family Stories focused on a specific group of Special Needs. Here are some links from previous years organized by category:

February: Heart – 2017 || 2016 || 2015
March: Blood Conditions – 2017 || 2016 || 2015
April: Central Nervous System – 2017 ||2016 || 2015
May: Vascular – 2017 ||2016 || 2015
June: Orthopedic – 2017 || 2016 || 2015
July: Craniofacial – 2017 || 2016 || 2015
August: Infectious – 2017 || 2016 || 2015
September: Skin Conditions – 2017 || 2016 || 2015
October: Developmental – 2017 || 2016 || 2015
November: Urogenital – 2017 ||2016 || 2015
December: Sensory – 2016 || 2015

November is our month to focus on urogenital needs. And all month long, we’ll be featuring family stories of children with needs like anorectal malformation, cloaca, hypospadias, ambiguous genitalia, and VACTERL.

Over the years, many family stories related to these special needs have been shared. And – during this month focusing on skin conditions – we wanted to take a moment to look back at just a few of our favorites.

Let’s go.

Anorectal Malformations

In this post from 2016, mom Ileah shares the joys and struggles they had in the days, weeks and months following their son’s adoption.

Read more NHBO posts on this special need here.

Cloaca

In this post from 2015, Stephanie, mom to two daughters with urogenital needs, shares her answers to questions about parenting a child with cloaca.

Read more NHBO posts on this special need here.

Cryptorchidism

An anonymous mama tells her story to adopt a son with undiagnosed cryptorchidism (along with other urogenital needs) and how they have navigated the challenges they faced as a new family, one day at a time.

Read more NHBO posts on this special need here.

Hypospadias

Past contributor, Kam, shares the successes and challenges of walking through numerous surgeries her son had to endure to repair his hypospadias.

Read more NHBO posts on this special need here.

Incontinence

Regular contributor, Jennifer, put together a hugely informative post for families parenting children with incontinence.

Read more NHBO posts on this special need here.

Underdeveloped/Ambiguous Genitalia

An anonymous mama shares her story of adopting a daughter who. once home, was diagnosed with a DSD of Congenital Adrenal Hyperplasia.

Read more NHBO posts on this special need here.

VACTERL

The most common heart defects seen with VACTERL association are ventricular septal defect (VSD), atrial septal defects (ASD), and tetralogy of Fallot (TOF).

Past contributor, Amy, recounts their family’s journey to adopt a little girl with numerous acronym-ed special needs, including VACTERL.

Read more NHBO posts on this special need here.

The post November Special Needs Highlight (and Favorite Family Stories): Urogenital appeared first on No Hands But Ours.

When we are researching special needs we usually get the big stuff covered: medical necessities such as surgeries, procedures and therapies. Once we check those boxes we feel we are “good to go” and will figure out the rest on the way. At least that’s how I am!

We have a son diagnosed with VACTERL association. This was not in his adoption file but instead a slew (yes, a slew) of various medical needs that all added up to VACTERL diagnosed by a doctor once we were home. We understood the surgeries and knew how to manage the need but, of course, things come up that make you say, “I never thought about this!”

One of those things for us has been traveling. Anytime we travel, whether it’s overnight for a reunion, a few days at the grandparents’ house or a week for post-op visits, we have to pack “everything plus the kitchen sink”. Now I will say, every child with VACTERL is different and this will look different for each family. For instance, my son has the V, A, C, and R components of the association. VACTERL stands for vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities. People diagnosed with VACTERL association typically have at least three of these characteristic features. So a family that has a child with the “T” component might have extra or different supplies to bring on a trip.

Potty Seat – we have forgotten this before and poor kid had to do the “China squat” so he wouldn’t fall into the toilet.

Tray table – most hotels have a mini table that can be moved into the bathroom so sometimes we don’t bring this. It’s very bulky so we try to if we don’t have to. Plus it’s not 100% necessary but it’s nice to have a surface to play on if you’re sitting on the toilet for an hour!

A step stool – if your child’s feet don’t touch the floor then it’s nice to have a stool to rest them on to prevent them from falling asleep. That can be uncomfortable! But we’ve recently started leaving this off the list and finding other ways to prop up his feet. Like a suitcase!

Items of Entertainment – this can be an iPad/tablet, coloring books, puzzles, Legos, etc. It’s just nice to have items that help pass the time instead of staring at a bathroom wall.

Enema bags – along with a wire coat hanger to hang the bag, or Command Damage Free hanger hooks. These can be very helpful to have on hand!

We always carry an extra backpack that serves as a “medical bag” in case we are gone all day long as well as keep extra supplies in our car. I like to advise families to keep an empty water bottle in their car in case you need to cath while driving. (I have crawled in the backseat many of times and helped our son out when there was nowhere to stop and get out.)

While my son and others diagnosed with VACTERL may always have to be thinking one step ahead on managing their need on a daily basis, there is no reason they cannot live life to the fullest! We treat this need as his “normal” and treat his management as just a part of his routine like brushing his teeth or getting dressed.

Sometimes our son will start to feel sorry for himself and see all the extra work everyone goes through. He doesn’t “get” why he was made differently. I choose to tell him everyone is made differently and we just have to “rock” what God gives us!

We are so blessed to be his parents and keep pointing his mind in that direction.

– guest post by Stacie: email || Facebook

The post Life with VACTERL: Staying One Step Ahead appeared first on No Hands But Ours.

I can say with certainty that becoming a mother has been the most unique experience that I’ve had in my life thus far. That sentence sounds strange to me as I write it because people becoming parents is maybe the oldest and most common experience known to the human race. We still exist after all.

For me, it is the most unique for two reasons. Firstly, I cannot compare it to anything else and secondly, I would never have understood what it meant to be a mother until I became one myself.

Like anyone, I had ideas and expectations of what early motherhood would look like for me. I am just beginning this journey, as my daughter is only six months old now. I have yet to parent through the toddler stage and, God help me, the teenage years. Many told me that being a mom would be the hardest thing I’d ever do but also the most rewarding. So far, I can generally agree with that statement.

Mary Clare is the greatest joy that both my husband and I have ever known.

There’s a quote that decorates a wall in my obstetrician’s office that reads, “To have a child is to decide forever to let your heart go walking around outside your body.” I read it every time I sat there waiting but it didn’t fully resonate until my brand new, little baby was taken away from me and rushed to another hospital due to breathing difficulties.

Not even 24 hours after she was born, the doctors were concerned that she was coughing quite a bit and producing a lot of mucus. Her heart rate was elevated and her skin had a blue hue. She was transferred to the NICU downtown while I, not even 24 hours post-partum, had to stay at the hospital where I’d given birth to her.

When she arrived at the NICU, the chief of pediatric surgery quickly diagnosed her with VACTERL syndrome, an acronym for a grouping of defects where three of more medical defects are found together. The “T” stands for tracheo-esophegeal fistula (TEF) and was the most urgent and serious issue found. She had surgery soon after the diagnosis to correct the TEF and has done tremendously well ever since.

Besides the medical drama, the challenges of motherhood come in forms that I didn’t expect. The lack of sleep for one. My college years were actually quite stressful, and having taken on too many difficult classes and extracurriculars, I am happy to be done with that part of life. Living in China was very frustrating at times; language barriers, pollution, miscommunications, etc. I thought “hard” meant things of that nature. What surprised me was that motherhood was difficult in that I was lonelier as a new mom than I’d ever been before. At the same time I absolutely adored my newborn baby. The highs and lows were extreme.

The most significant influence that my becoming a mother has had on my view of adoption is a greater appreciation for both my adoptive parents and my biological parents.

That quote on my OB’s wall is true for parents whether their children are biological or adopted. A little person becomes part of a family and they are forever stitched into the fabric of our lives.

I hear adoptive parents express that they did not “save their adoptive children” and I think that it’s not a bad attitude to have. It speaks of their humility and unconditional love. My parents say the same. At the same time, I do believe that the adoptions of both my sister and me were heroic (in the same way that I think having biological children is heroic) and I’m not afraid to say that in a way they did “save” us. It was God’s plan to bring our family together and they were not afraid to say yes to Him.

A quote that circulates around social media within the adoptive community quite often reads, “A child born to another woman calls me mom. The depth of the tragedy and the magnitude of the privilege are not lost on me.” Again, this quote speaks truth to me more now because I personally understand the privilege that motherhood is.

In the same way that I couldn’t imagine losing my daughter because of her health issues, I could not imagine having to give her up for adoption for one reason or another. Maybe the latter would be even more painful knowing that she were still living in the world and I couldn’t be with her.

Adoption is so beautiful because it brings healing and redemption not only to children but parents as well. What begins as a tragedy unfolds into a story of love.

When my daughter turned four months old, I faced a heart wrenching reality. I had been caring for this child for four months, spending every moment together, feeding her, bathing her, sleeping next to her, and watching her grow and learn. Four months… sounds like such a short time but felt like an eternity.

At four months old, I had been separated from my birth family. I wonder why I was kept for those four months. What event, what situation changed that? I was left at a train station and I imagine heartbreak, utter despair but I just don’t know for sure.

I know that some adoptive parents worry about over romanticizing birth parents. I think that’s a valid concern. Prudence should be exercised when considering such emotional and sensitive topics.

It’s only natural that we (adoptees) would fill in the gaps of our minds with the best of hopes. I am only now able to think somewhat critically about this issue. There is a need to protect adopted children and safeguard their hearts against over romanticized, self-created ideas about birth parents. At the same time, we must understand that they will wonder and fanaticize about what might have been.

So how to talk to your child about their birth parents? That’s a good question. One that I’m not sure I can answer alone. My parents told my sister and I that we were loved by our birth parents.
Did they know this with certainty? No.
Did we believe it and did it make us feel good? To a degree, yes.
Was it the right thing to say? I don’t know. But I don’t think that it was harmful.

Navigating this topic is different for every adoptee and every family. Maybe you do know the circumstances surrounding your child’s adoption. Maybe they have a tragic story. I think that honesty is a good policy considering that a child is emotionally mature enough to process the truth.

What our children should know with certainty is that they are unconditionally loved by us and wanted by us. I never doubted that those two things were absolutely true coming from my adoptive parents – and that has made all the difference.

The post When an Adoptee Becomes a Parent Herself appeared first on No Hands But Ours.