March for Babies 2010!

Most of us are familiar with the March of Dimes, but did you know that they fund research and programs about how to prevent birth defects, how to keep babies healthy throughout pregnancy, how to reduce the rate of premature birth, and even how to help preemies once they are in NICU?

That Folic Acid supplement you took before you even got pregnant? March of Dimes funded research. Surfactant Therapy that your preemie received in NICU? March of Dimes funded research. How can you help the March of Dimes continue their mission to keep babies healthy? One way is through participating in or creating a local March of Dimes Walk-a-thon.

March for Babies 2010 is the name of the program that oversees local March of Dimes Walk-a-thons and event. Seventy six cents of every dollar raised during March for Babies 2010 will go directly to research and programs! Despite the name, dates of local fundraising events are not limited to the month of March. Visit the March for Babies 2010 site to find activities in your area. Read more!

Guest Blogger Post: The Fragile Lungs of Your Preemie

Able2able is proud to present Dee Landry, our first Guest Blogger! I e-met Dee through Wahm.com, a networking and information site for Work at Home Moms. Years ago, I read that everyday household fragrances and chemicals continuously irritate and can permanently damage fragile little lungs. These irritants silently contribute to Chronic Lung Disease, Respiratory Infections, and have been linked to Asthma. When I learned that Dee is a Registered Respiratory Therapists as well as a blogger, I asked her to join us for Preemie Week and share some of her knowledge on this subject.

The Fragile Lungs of Your Preemie by Dee Landry

When people have a premature infant they realize how precious that tiny little life is. That is until the child grows up a bit and hopefully catches up to its peers in those developmental milestones that are on all the charts. One thing that's soon forgotten is that some things, things that aren't seen with the human eye, are slower to develop than others and some never do catch up. One thing in particular is the lungs.

To understand how fragile the lung of a preemie is, we first have to look at the development of the lung before birth.

Weeks 2 - 16 the major airways, bronchial tree and portions of the respiratory parenchyma are formed.

Weeks 16 - 24 the last generations of the lung periphery are formed. Epithelial differentiation and the air-blood barrier is formed.

Weeks 24 - 36 we have expansion of the air spaces and surfactant is detectable in amniotic fluid.

In the last few weeks of pregnancy the first alveoli are formed. Alveoli are the tiny air sacs that inflate and deflate and where the exchange of oxygen and carbon dioxide takes place. These alveoli are just starting out, and by the date of birth roughly 1/3 of the alveoli are fully developed. These numbers increase and the formation of approximately 300 million alveoli continues up to the first year and a half.

Now that we understand how a lung should be developing and continues to develop after birth in a full term baby, we can fully understand the problems and complications that can and usually do occur in a preemie. Since the lungs are one of the last organs to develop, immature and inefficient lungs are the most dangerous problems facing a preemie.

A preemie is often kept in a controlled environment in the NICU where their temperature and oxygen level is monitored for them, but once you get them home the fun really begins. That precious little life still needs you to control their environment as much as you can. That means no irritants for them to breathe that can cause damage or interfere with the continuing development of their lungs.

A cold can be life threatening. Inhaling dust, smoke, and even air fresheners can have effects on them that you may not be able to see. Did you know that the baby of a mother who smoked during her pregnancy can take longer to develop after birth than those of non smoking mothers? Sometimes up to 6 years, and if a child is continually exposed to second hand smoke after birth that development may never be completed.

For this reason, it's important to take care of the air around your preemie and not let anything or anyone interfere with his continued development:

• Make your house a smoke free zone.

• When using cleaning chemicals, make sure the house is well ventilated and keep the baby in a separate room. Better yet, invest in an air purifier.

• If someone has a cold or the flu, don't be afraid of saying no to a visit or not allowing them to hold and play with the baby. It's a lot easier than having to rush back to the hospital due to a severe respiratory infection that their little bodies and lungs aren't able to fight just yet.

Don't be afraid of upsetting Uncle John or Aunt Suzy. I mean isn't your child's health and future well being worth a few hurt relatives and friends?

________________________________________________________________

Dee Landry is a Registered Respiratory Therapist with 30 years in the field. She was Clinical Educator and Lead Tech for the NICU, Pediatrics, and Mother Baby Unit at Little Company of Mary Hospital in Evergreen Park, Illinois where she worked for 23 years before getting into Home Care. It was her love for her patients and education that led to the development of Sneezes & Wheezes where she provides easy to understand education on varying health diseases.
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911 and Your Preemie

Do you know if you are supposed to register your address with your local Emergency Services Provider when you bring your Preemie home? Some hospitals include directions on how to do this in their discharge planning, but not all tell parents if this is necessary in their area.

Information about your baby's medical needs will be entered into a computer network, and automatically pulled up if a 911 call is linked to your address. Your Emergency Services Providers might want to know before arriving at your house if your preemie (or newborn) is medically fragile, requires special monitoring, or is on oxygen .

Call your local Fire Rescue and ask if they need your baby's information. If the answer is no based on your baby's current condition, be certain to ask if they want to know if the baby has a change and is monitored or on oxygen in the future.

We were given a registration form to complete and hand deliver to our county Emergency Command Center the first time Baby Bear had home oxygen. We never thought about telling them when the oxygen was dc'd. Oops.

We later moved across state and had oxygen in the home again. We were not told to register that time around. Last weekend, at my son's birthday Fire Station tour, I found out that I should have called a county number to have our address updated in the system. Oops.

We've been oxygen free for a couple of years, but I still need to register since Clara-Bear is primarily non-verbal. This way, Emergency Rescue workers will know that there is a child in the house who will not answer when called or call out for help. (I forgot until I started writing this post - oops again.)

Registering is optional, but in case of emergency, the more information Rescue Personnel have up front, the better they can help your family.
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Review & Giveaway (ends 3/27): Set of 2 "Please Wash Your Hands before Touching Mine" Hanging Signs

The real name is My Tiny Hands signs, but I've always heard people refer to these cute little stroller, car seat, and baby carrier signs as "that little wash your hands before touching mine sign." I got ours from the makers of Synagis when Clara-Bear was still receiving her shots. I had no idea you could order one of these cute and helpful signs for only $7.95 or I would have stocked up for shower gifts. For this giveaway, three able2able readers will win a set of two signs each!

There are other versions of hand wash request signs out there - one I've seen recently on several blog giveaways is similar to My Tiny Hands, but is less direct about what the parent is asking. It even uses the word "germ" in a cute way. One thing I have learned between working in NICU and having a medically housebound child, is that some people don't understand the germ thing, no matter how cutely put.

It's difficult to believe if you haven't been there, but there are people who are offended when they are asked to wash their hands before touching a baby or child. They think that chemo is the only time that an immune system is impaired, and any other time it's over reacting. They don't get that even healthy newborns are not ready to fight every bug out there, and that there are other situations when the immune system cannot do its job properly. It's stressful when someone gets angry because they think they are being called dirty. They really don't understand that germs are everywhere and on the cleanest of people.

This ignorance is a recurrent problem with visitors to NICU and a common complaint from parents of housebound infants and children. I think the sign using the word germ has the potential to upset sensitive people and the needs of the baby or child can get lost in the hard feelings it can cause. My Tiny Hands signs get to the point while leaving the teaching to the parents.



So, My Tiny Hands signs remain my favorite. The signs are made of washable and weatherproof silicone and come in pink, blue, and red. There is a Spanish version available in red. I've had the same red sign hanging by my front door for two years, and it is still as bright as it was the day I first hung it. (I was going to take a picture, but when the kids saw me take it down they wanted to play with it and it's disappeared.)

I also have one hanging by Clara-Bear on our double stroller. It's become a stress reliever. We're friendly people, and love it when strangers want to meet our children. But when you live with fear of illness, strange hands are hands that might have just been coughed into or could have come straight from a public bathroom.

It's a relief when a stranger sees the My Tiny Hands sign, and asks to sanitize their hands or puts them behind their back as they lean towards the kids. I want Clara-Bear and Alan to enjoy meeting new people without hearing "Sorry, but I need you to clean your hands before you touch the kids" every time we're out. This sign works so I don't have to!

Three readers will a set of two My Tiny Hands signs in their choice of color! You have the opportunity to enter this giveaway up to 11 times, but you can only win one set. If more than one of your entries is picked by Random.org, the drawing will be repeated until a first time winner is chosen.

(Check out our giveaway FAQ's if you have never entered a blog giveaway before.Email me for directions on how to post anonymous entries or if you are still confused about how to post a comment.)

Mandatory 1st entry: Visit My Tiny Hands Germ FAQ's (yes, I know, I used the G word) and post a comment about something you learned about germs.

The Mandatory first entry must be completed before any of the additional entries will be counted.

For an additional 3 entries: Become a public follower of able2able. Post 3 separate comments for your entries as a new follower. Current able2able followers may enter 3 times in every giveaway on able2able.

For an additional 2 entries: Post a link to this giveaway on your Facebook status. Post 2 separate comments for your entries for your Facebook update.

For an additional 4 entries: Blog about this giveaway! Your blog post must include links to able2able and to My Tiny Hands. Include a link to your blog post in your comment. You must post a comment for each entry.

For an additional 1 entry: Enter another current giveaway on able2able. Include the name of the giveaway in your comment.

It is very important that you post a comment for each entry. Why? Because a random number generator will be used to select the winner. Each comment will be numbered by Blogger, and I will use those numbers for the drawing. So if you combine entries into one post all your entries will not be counted. There will be no do-overs! I will verify that the winning entry has met the requirements above, so if your comment for a FB status update is the winning comment then I will want to see that update, etc. If I cannot verify your entry, then all your entries will be removed from the list and the drawing will be repeated.

This giveaway ends at 12:05 am (CT) on Saturday, March 27th. The winner's name will be posted on able2able sometime on Saturday, March 27th and I will also email you. The lucky winner will have until 11:59 pm (CT) Monday, March 29th to contact me.

able2able... Your Special Needs Resource Directory has not been compensated with either $$$ or product for this giveaway. I have used this product for years, but did not receive mine directly from the giveaway sponsor.

You might also like Don't Let the Sunshine Fool You, Flu Season isn't Over Yet!
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Our Preemies, Then and Now: A Photo Gallery of our Friends

You know you're the parent of a preemie when you see past the tape covered face to the beautiful baby underneath!

In honor of Preemie Week, here's some then and now pictures of friends of able2able. If you would like your Preemie's pictures added to our gallery, please email me.

EMERSON (mosaic partial deletion of 9q and 12p chromosomes, autonomic regulation issues)
THEN: born at 32 weeks, 5 pounds
NOW: 14 months old and 19 pounds! (11 months in this picture)


JACKSON (Down Syndrome)
THEN: born at 30 weeks, 2 lbs 5 oz

NOW: 11 years old and 65lbs

RAELYNN RUBY LEE (Chronic Lung Disease, Liver and Spleen enlargement, Respiratory Distress, Thrombocytopenia, developmental delays and a type of hyperthermia)
THEN: born at 26 weeks, 1 pound 14 ounces, 12 inches long
NOW: 16 months old
Please pray for baby RaeLynne - she was admitted to the hospital last night!

ELIJAH (Raelynn's big brother, Down Syndrome, AVSD repair, Connexin 26, Cochlear Implantation, 8 sets of PE tubes, SureSteps, Chronic Ear/Sinus Infections)
THEN: born at 34 weeks, 4 pounds 14 ounces, 18 inches long
NOW: 5 years old

AIDEN
THEN: born at 27 weeks, 1 pound 8 ounces
NOW: 3 1/2 years old


CLARA-BEAR (I know she's all over this blog, but they don't call me a Mommy Blogger for nothing! Down Syndrome, Autism, Non-verbal, Over-reactive Immune System)
THEN: Born at 26 weeks, 1 pound 8 ounces, 13 3/4 inches (yes, that's a quarter)
NOW: 4 1/2 years old
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How Many Warnings does it take before a Baby Product isn’t Safe?

This is part 2 of a 2 part post. Click here to read part 1.

The other product that made me uneasy is a Boppy product that offers to prevent the flat head that could be caused by placing a baby on his back to sleep (positional plagiocephaly). Boppy sells this product as the Noggin Nest Head Support, and Pottery Barn Kids sells it as the Boppy Head Support. There are also pillow versions of this concept made by other companies. We all know that Boppy makes some amazing products, and I so wish some of their newer items had been available when my kids were infants. But this head rest, not so much.

The brief product description on the Boppy site states that this is a head rest for bouncers, swings, and strollers. It does not mention car seat, cribs, or bassinet use. But it looks just like a car seat insert with a higher edge surrounding the face. There is one FAQ question about use in car seats, but you have to go to the tiny text in the sitemap at the bottom of the page and click on Product Questions to find the FAQ’s. If this limit is important to know, why isn’t this link on the product description page? Or why not state the recommended restrictions up front, without making shoppers click on a link?

The PBK site goes an extra step and mentions not for use in crib or bassinet on its product description page, but does not mention car seats. I’ve done enough patient education over the past twenty years to say with certainty that no matter how clearly you say it, telling somebody to do something is not the same as telling them NOT to do something. If I saw this at a consignment sale or on Craig’s List, I might think it was safe for car seats.

I can see using this while a baby is awake. But how can you stop a baby young enough to need this product from falling asleep while using it? Many parents like the way a swing or bouncer soothes their baby. I know more than one who has regularly let their baby sleep overnight in a swing or car seat. Even healthy young babies drop a chin to a shoulder while sleeping semi-reclined, like in a swing. Preemies or babies with low muscle tone might do this for quite a while. Can’t you just see a sleeping baby burying her nose in that edging around the face? If your baby was lying on this on a blanket on the floor while awake, would you want to move her every time she fell asleep?

Even newborns can flip or thrash around while crying – what’s to stop one from shifting out of position and sticking in her face in the head hole? This would be great in a car seat in the grocery store while you are face to face with your baby. But the back is so long I wonder if I would want to remove it from under a sleeping baby for the drive home, when the baby will be rear facing. It only takes 4 to 6 minutes without oxygen for brain damage to occur.

Maybe I’d feel better about the Noggin Nest and the Downtime Sleepy Hat if I haven’t seen babies in the hospital whose parents really weren’t aware enough of safety concerns to protect their babies from preventable injury. Not always the parent’s fault - sometimes they were never taught about risks or didn’t make a connection. Combine that possibility with sleep deprived and worried parents making judgments about where and how to use products based on eagerness to see their baby rest, and it’s a little too much reality for this nurse.

This is not a review. This is all my opinion based on what I’ve read online and my professional and personal experience. I have not actually seen either of these products. Obviously, somebody decided that these products are safe to sell as long as there are disclaimers and warnings.

And that's what makes me wonder. Shouldn't baby products be “plug and play” when it comes to safety? How many warnings should a baby product have before it’s no longer safe? Are you less likely to read warnings or to take them seriously when something looks simple to use? Should you have to look at multiple sources of information for the same product just to make sure that all the safety concerns are addressed?

Post a comment and tell me what you think.
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Clara-Bear's Birth Story

When I first started this blog in May, 2009, I wanted it to be all about sharing information and assisting parents of Special Needs children with researching information and interventions. I did not plan to share my family’s pictures or names. But readers wanted a more personal touch. As a blogger and proud Mommy, I’m glad I agreed. I’ve had some requests to share more of Clara-Bear’s story. Since there would be no able2able without my Prettiest Pretty Princess, I think Preemie Week is a good time to start.

(Clara-Bear and Mama Bear Hold Hands for the First Time)

Clara-Bear’s Down Syndrome was diagnosed by amnio when I was 17-18 weeks pregnant. It was not an easy pregnancy – if I wasn’t working as a nurse in NICU, then I was on my back trying to stop the constant cramping. This made life kind of difficult since we had moved to Tennessee when I was 7 weeks pregnant to buy a business that needed much more attention than we realized. I was seeing a local OB/Gyn close to our home out in the country, but transferred to a Knoxville Perinatalogist after the diagnosis.

Clara-Bear was growing slowly so I was very closely monitored, usually every 2 weeks. Part of every visit was a warning about Clara-Bear’s high risk of fetal demise – just what every mom wants to hear. We were on our way to a visit during Baby-Bear’s 25th week and I remember telling DH that I was putting the smack down. No more talk about fetal demise unless it was about to happen. Fateful words!

(Papa Bear Holds his 18 Day Old Baby Bear for the First Time)

As soon as I saw her placental blood flow on the ultrasound I knew that something had changed. The tech’s reaction was a big clue as well. I took big breaths on the table, fighting tears as we waited for her to get the doctor. Like many babies with DS, Clara-Bear was having placental blood flow problems. We later learned that we were hearing the words fetal demise so often because over 50% of Down Syndrome pregnancies are lost in the second trimester.

The Perinatalogist was grim. We knew Baby-Bear was small, and there were some concerns about a possible blockage in her gut. He felt her prognosis was poor. We toyed with the thought of not delivering her if she could not make it to 28 weeks, when her chances of survival would be much higher. I was sent home for a weekend of bed rest. If you can call crying, praying, and trying not to wonder how small they made coffins “resting”.

(I'm a little princess, pretty in pink, I look cute when I cry, and my diapers never stink - 2 months old)

I burst into tears when I saw the placental blood flow at the follow-up ultrasound. Poor DH was freaking out – I couldn’t breathe enough to talk and tell him what I was seeing. Clara-Bear was now losing half of her blood flow to me. It was decision time – “let nature take its course” as the Perinatalogist was implying and return in two weeks to have the baby removed from my body, or to have an emergency c-section.

I had tried to contact some of my Neonatalogist friends back in Florida over the weekend and couldn’t reach any of them. I was still new at the NICU where I worked and had not become the Mommy Advocate I am today, so I was shy about calling any of those doctors. The Perinatalogist was not saying positive things about our baby’s chances of survival because of the DS, her size, and her gut. But I didn’t care. I couldn’t let my baby die based on vague numbers. I asked to be admitted and to speak to a Neo.

(A tape-free face after 2 1/2 months)

I asked the admitting nurse to turn the volume down of the fetal heart monitor. I had cried with joy when I heard Baby-Bear’s heartbeat at our first ultrasound and loved that part of our visits ever since. It made me feel connected to her. Now, I was afraid of hearing that precious sound stop and losing that connection forever. I kept telling DH, “If we don’t deliver her I’m not going home. I can’t walk around pretending everything’s normal and wondering if it’s happened yet.”

The first words from the Neonatalogist’s mouth were “why do you think your baby has less chances of survival because she has Down Syndrome?” He told us that micro-preemies with Down Syndrome were so rare that there were no statistics on survival, but all the neo’s felt that her chances of survival were the same as any 26 weeker. He even told us that the perception amongst the neo’s was that babies with DS were stronger than typical preemies. I signed the consent for a c-section on the spot. There were still some hopes of getting a little more time out of the pregnancy, but ½ hour after I signed the consent, Clara-Bear went into distress. I had never felt God’s timing more in my life than I did at that moment.

Clara Romana Midgett earned her first nickname, MiniMidg, on August 8th, 2005 when she was delivered at 26 weeks weighing 1 pound 8 ounces (707 grams), measuring a long, skinny 13 ¾ inches, and with rocking APGAR’s of 9 and 9. Her gut was fine and she had the typical preemie course – some feeding issues, an infection, blood transfusions, oxygen. She had a Ventral Septal Defect, but we were told that it was small and she would outgrow it. Overall, she was a tough mini-cookie.

(Last bottle in NICU, the next will be at home!)

She came home from NICU four days before her due date; with an apnea monitor, but on full bottle feeds and without oxygen. My constant prayer after her Down Syndrome diagnosis was that she be healthy. Unfortunately, the severity of her heart defect was misdiagnosed and she had severe reflux, so the next 8 months did not go smoothly for her. But I’ll tell that part of her story another time.

(Our little doll, finally home after 88 days)

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Divorce and the Special Needs Family - Vow Not to be a Statistic

It's an ugly thought to dwell on, but divorce rates amongst families with Special Needs children are high. I had a difficult time tracking down numbers that were associated with credible sources so when I quote the following statistics, it's with nothing to back them up. I'm sharing them because even if these numbers aren't true, our society believes they are. That's a grim statement about how family life with a Special Needs child (or children) is perceived.

- 85-90% of parents with Autistic children divorce.
- 75% of parents who experience multiple miscarriages or lose a child divorce.
- 75% of parents with a Special Needs child divorce.

When Clara-Bear was in the hospital for a month following RSV, we developed a good relationship with many of her specialists. Her Infectious Disease doctor brought us a newspaper article that quoted the 75% of parents with SN children divorce rate and she complimented us on our communication. We laughed of course, because anybody who's every watched us try to do a home improvement project knows that communication is not our strong suit.

But one thing we do communicate well about is our feelings about Clara-Bear. We promised each early on that we would not judge each other for expressing our feelings about the changes a Special Needs child brings to our vision of a family. And no matter where else we have clashed as a couple, almost 5 years later we are still keeping this one promise.

Society is correct in viewing married life with a Special Needs child as stressful at times. But I think they are looking through fear goggles and exaggerating the stress. I know we are living some of our friends' worst fears for their children, but most of those fears are based in ignorance. Just because they can't relate to our struggles doesn't make the struggles any worse than theirs or the pressure on our relationship any different than what couples around the world face. The pressure is just different. And we live in a society that still can view different as something to be feared.

There are so many reasons a marriage can fail. And bringing a Special Needs child into an already rocky relationship can be the unfortunate final straw for some. Only you and your partner can decide how your relationship will evolve with your family. Don't just worry about it, vow together to fight for your family.
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