Learning to Walk

Little Hui was born with a complicated version of anal atresia that involves not only the anus, but also requires reconstruction of the urethra and vagina as well.  This little princess has already undergone several surgeries.  But she doesn't let that slow her down; she still wants to keep up with everyone else!

Hui recently celebrated her first birthday.  Like most babies her age, she's been spending her days learning to walk.  She started out with a few hesitant steps and is now toddling back and forth, getting steadier day by day.  Since she's put so much time and practice into learning this new skill she's decided to give lessons.  After all, it's a lot harder than it looks and there are so many babies who could benefit from her practical advise and new found wisdom!

 

Lessons in Walking

by Hui

First, you have to have a good attitude.  Make sure you've had enough rest and plenty to eat.  A clean diaper and a pretty hair bow are also helpful.  Put a big smile on your face - sure, it's hard work but it's also good fun!  Like this:

 

  

  
Next, find your balance.  You've probably been practicing this over the past few months when you learned to sit, pull up and stand.  Make sure you have your feet firmly on the ground.  You'll probably find it easier to hold your arms out for balance.  Don't worry if that looks awkward; as you get better you can hold your arms in a different position, or even use them to carry something!  Like this:

 

As you move forward, you may need to look down.  This can help you navigate obstacles, like toys that may be been left in a dangerous position.  It also helps you know where your feet are and where to place your next step. Like this:

 

  

Make sure you don't spend all your time looking down, though.  Look ahead to where you are going.  Your feet will follow your eyes (and you don't want to fall down!), so pick out a goal and head straight for it!  Like this:

 

And what kind of a target are you headed for?  Well, best to choose something really good!  Maybe a toy you saw from across the room but never had a chance to explore.  

 Even better than a toy, though, is a person!  Choose a person who really loves you.  Someone who will help you up if you fall, and cheer all of your successes.  Like this:

 
If you hold out your arms, they probably will too.

And what is better than a big hug for learning a new skill and a job well done?

Practice these steps over and over.  You'll get lots of hugs and before you know it, you'll be an expert at this business of walking!

THE END

Happy Birthday, Ping!

Little Ping has not been with us very long, but one of the things we were really looking forward to was celebrating her 4th birthday with her.  You can imagine our disappointment when just the day before her birthday she became seriously ill and needed to be hospitalized.

 

After thinking it over, and discussing with her doctors, we decided we could still celebrate in the hospital.  We brought the cake we had ordered, candles, and a special birthday crown.  The hospital staff provided balloons and a few other small gifts.

 

 Ping looked rather warily at the cake.  We wonder if she's ever had a cake, or celebrated a birthday before? 

 The candles are lit and everyone sings happy birthday:

Since Ping is on CPAP and has a trach, she cannot blow out the candles herself.  But she watches with interest:

Although her appetite is off and she's not very hungry, she politely tastes it anyway:

Happy Birthday, sweet little Ping!We hope you feel better soon, and promise that next year will be even better!

Hospital Duty

 One of the most difficult aspects of helping abandoned children here is meeting their complex medical needs.  Because most of the children we accept have some form of congenital defect or serious illness, we deal with these challenges on a daily basis.

 

The first step is to find out what is wrong.  Sometimes this is obvious and no tests or consultations are needed for a diagnosis, like with babies who have a cleft lip/palate or anal atresia.  Other times we are fairly certain but need a specialist to confirm or narrow down the diagnosis, like with babies who have EB or a complex heart defect.  And sometimes it is maddeningly difficult to figure out, particularly with babies who have had a previous surgery (usually not successful), brain damage or appear to be simply FTR (failure to thrive).  Because our babies come with no previous medical history, pregnancy, delivery or hospital records, everything is a guessing game, and each one needs a special advocate to dialogue with doctors in order to weigh the various options and choose the best plan for treatment.

None of that is easy, but equally difficult is providing the basic care each child needs while they are hospitalized.  Because Chinese hospitals do not provide the same basic nursing care that is standard in many other countries, each patient must be accompanied by a family member who will be responsible for changing bed linens, toileting or diapering, washing, feeding etc.  The hospital doctors and nurses provide actual medical treatment, but all other aspects of care are left to a family member, who must stay with the patient 24 hours a day.  You can see where this is going, right?

 

Each one of our babies in the hospital must be accompanied by a special nanny who is willing to do 24 hour duty for many days or weeks.  The nannies are responsible for all aspects of basic care, just as they are at our baby home.  In addition, they must follow all pre and post-op care requirement laid out by the medical staff.  Babies who have just had cleft surgery have special feeding requirements and are not allowed to suck on toys, fingers or anything else until the wounds have completely healed.  Nannies are usually instructed not to allow their little charges to cry or become upset, as this affect recovery from nearly any type of surgery.  Many times the babies in hospital are scared, in pain, having difficulty breathing or feeding, and of course, sleeping very little.  This is truly a difficult job!

Little Ya has been in the hospital for nearly 6 weeks now for surgery to repair bladder exstrophy.  Her nanny must find ways to keep this toddler happy and entertained while keeping her pelvis completely immobilized:

 

Baby Fei is awaiting cardiac surgery.  He's already completed a lot of pre-op testing, but surgeons are still consulting on the best surgery plan for him.  His nanny's trying to keep him happy while he waits...

 

 

Baby Bo was born with esophageal atresia and tracheoesophageal fistula (TEF), and he has experienced many serious complications and undergone multiple surgeries to try and save his life.  He is very thin and frail now, but his nanny rocks and comforts him despite his poor prognosis.  She knows that her nurturing is very important to his recovery and development.  And if he doesn't make it, her love and gentle cuddles will have made all the more difference - a little life otherwise spent in loneliness and despair.

We are so grateful to our dedicated nannies who are willing to go the extra mile and accept hospital duty assignments.  You won't see these ladies when you visit the baby home, and they often miss out on parties and other outings that we have for our staff.  But please know they are working hard behind the scenes; without their loving commitment we could not possibly achieve the incredible successes that we do.  Thank you to all of our hospital duty nannies!

 

(Nannies for Bo, Fei, Xin and Yi with their little patients at #81 Children's Hospital last week)

Thank you, MEDWISH!

We are so blessed to be aided by an incredible organization called Medwish.

Medwish re-purposes perfectly good, brand new medical supplies that are discarded or donated by hospitals that can no longer use them.  Organizations like ours can apply to receive items that we need from a huge list of available supplies.  We sent Medwish a list of medical items that we use on a regular basis and they sent us what is probably thousands of dollars worth of supplies.  Some very generous volunteers donated their luggage space and carried these items over from the US.  The photo below shows only part of what we received:

 

Our preemies benefited from a large donations of little hats -something we have a hard time finding locally.  Our little preemies often need hats to help maintain a stable body temperature, but most of the hats available in stores are too large and slip down over their eyes.  These hospital nursery hats are PERFECT and we are so happy to have them!

Medwish also sent us a big bag of preemie nipples, which we were desperately searching for.  We used to buy the Gerber brand newborn latex nipples, which are incredibly tiny and perfect for using with preemies who are just learning to nipple feed.  But Gerber has discontinued their product, and we have not found a similar product elsewhere.  Medwish managed to find us just what we needed!

Another item we use in great quantities are colostomy bags.  We usually have several babies at any given time who use these, and while they are not hard to find, they are quite expensive.  It was one of the things on our "wish list" and we were delighted to find they packed those in our box too.

Preemie pacifiers are another specialty item that we need, usually only available from hospital supply companies.  We encourage our tiny preemies to use a pacifier, even before they are feeding from a bottle -  it helps them practice and keeps them interested in sucking.  Regular size pacifiers are too big for most of our preemies, but these are just what we need.

Of course, the items that we need most at this time are dressing and bandages.  Medwish didn't let us down there, either.  They surprised us with a great selection of sterile gauze, medical tape, stretch bandages, hydro colloid dressings, non-adherent dressings... the list goes on and on.  Opening that box was better than Christmas!

Here, little Ping relaxes in a a chair while his deep pressure sores are cleaned and dressed:

Our EB girls are the biggest users of our bandages and dressings.  We like having a good selection of supplies on hand, so we can choose the most suitable size and type according to how their skin heals and breaks down each day.

Thank you, Medwish, for sending these supplies.  We are so grateful!

Happy Birthday, Rose Xiang!

Rose Xiang celebrated her 4th birthday on Thursday.  It was a very special day because there was a box that came just in time, all the way from her family in America.

What's in the box?  Wen and Mei are happy to help out!

Look at this, a photo book from her family!

         

 

And lots of other things, including one of her favorites...

SUNGLASSES!

And some new skirts, made especially for Rose by her sister:

And a few new dresses to go with the cool sunglasses:

And some new sippy cups!  How perfect, as Rose is eating very well but not doing much drinking yet. Perhaps this is enough to spark her interest.

Yes, she certainly knows what they are for!

OK, let's try that with some real water:

And a beautiful cake!

Happy Birthday, Rose Xiang!

Rose didn't have any cake, but everyone else enjoyed it!

One last happy thing, a birthday card from Rose's family. Just think, this is the last birthday she'll celebrate without her mom and dad and brothers and sisters!

Happy Birthday, Rose Xiang.  You're really growing up!