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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Thursday, July 26, 2012

Lilly's Trisomy 18 physical features - Part 2

Photo credit - first 3 photos - Steve RubinTaken very shortly after Lilly reached the milestone of one year old

Hands down, my most popular blog post has consistently been "Lilly's Trisomy 18 physical features."  It occurred to me recently that I wrote that post when Lilly was only 2 months old and I still knew so little about Trisomy 18.  So I thought I would write a part two of the post, sharing a few more things that I have learned that children with Trisomy 18 tend to have in common.

In my first post, I shared that Lilly's small head size and tiny mouth and jaw were normal in the T-18 world.  Another interesting and very very common facial feature was this shape and "style" of her eyebrows and super long eyelashes!  These features make so many T-18 children look like "cousins."  Some children even have a "unibrow" and some have hair that lightly grows up their foreheads - leading some parents to shave it off!  (No we never needed to shave Lilly.)

In the above pictures you'll also notice Lilly's "crazy hair."  Quite a number of T-18 children just have some crazy cowlicks.  I find it really endearing.  :)  Lilly's was like a mohawk.  She continued to have the "swirls" on the back of her head.

Children with T-18 tend to have eyes that are very sensitive to the sun.  We tried to always put sunglasses on Lilly when we took her out, and if it was really sunny, a hat too.  We had two strollers and always used the canopy top on them to further cut down on sun and glare.

Weak muscle tone is another commonality.  Lilly had both physical and occupational therapies once each week to help with this.  She LOVED these sessions and was a hard worker! Lilly was never able to sit on her own for more than a minute, though she was getting a lot better at it when she passed away.  She never held her head up for long either.  So we always were careful to support her head, just like you would a newborn.

Lilly preferred to hold her arms like this next picture shows.  She also tended to keep her hands clenched.  She was able to open all her fingers, but when she relaxed, they went back to the clenched position.  (Though not a hard clench like when she was born.)  I've been told that even the older children - those in their teens - would still go back to a clenched position when they were really relaxed or tired.

To help train Lilly's hands, we got her hand splints, to hold her hands open.  She usually only wore them at night while she slept.

In the above picture, notice the oxygen cannula on Lilly.  Because she had a heart defect and obstructive apnea, sleep studies showed she needed oxygen while she slept.  There are many T-18 children that need oxygen at night, or even all day.  Also children that have to have a trach for breathing is not too uncommon. 

Lilly had two holes in her heart, known as a Ventricular septal defect, or VSD.  The majority of children with T-18 have some kind of heart defect.  Lilly needed it repaired pretty quickly but she was so small and weak that doctors were afraid she would not survive the regular heart surgery.  So she had surgery to have a pulmonary artery band put in first.  (Unfortunately I wasn't good at "labels" for my posts when I first started blogging.  If you want to read more about this, go to September and October posts of 2010.)  Lilly finally was able to get the regular heart surgery, to patch the holes, in November 2011.  (Go to label "heart surgery" to read about that.)  Here is Lilly sleeping peacefully after heart surgery.  (The scar healed remarkably well.)

When Lilly was hospitalized the first time, while waiting for the pulmonary artery band surgery, she had an Nasogastric feeding tube placed.  She was able to bottlefeed, but - because of her heart - she just didn't have the stamina to feed long enough at a time.  This is the "NG" tube, which was hooked to a Kangaroo Joey feeding pump. 

If you look close at the above picture, you can see a little split in Lilly's upper lip.  Regular cleft lips are not uncommon for T-18 children.  

Lilly had the NG tube and was on continuous feeding, via the pump, for almost 8 months.  We tried a lot to get her to drink a bottle again.  But she was not interested anymore after the NG tube was placed.  I guess because it was uncomfortable to swallow.  So we finally had a g-tube placed for feeding.

That made Lilly SOOOOOO happy.  She HATED the NG tube!

Feeding Lilly was an adventure at times with the G-tube.  I ended up doing a blenderized diet with her, which you can read about here

Children with T-18 are small.  Lilly was 5 lbs. 4 oz. at birth and 18 inches long.  I thought that was tiny - but I have learned, she was actually a good size.

These children grow and gain weight slowly.  When Lilly passed away, 17 months later, she was at 13 lbs. and about 26 inches long.

One other BIGGIE, that I need to mention, is that children with Trisomy 18 have very weak immune systems.  Lilly had numerous colds, was on several rounds of antibiotics, and was hospitalized twice for for viruses.  We did a number of things to boost her immune system.  You can read about some in this post and this post

Finally, I have to say, that Lilly was the most contented little thing I've ever known.  Many other parents of children with Trisomy 18 have told me the same thing about their children.  They are happy and loving.  They fight hard to live.  And they bless their families in incredible ways.  They change our lives for the better.  Thank you God for Lilly!
"For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made . . . ." - Psalm 139:13-14

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