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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, December 5, 2013

Day 7 - Remembering Lilly - January 2011

This is my 7th post in a 17 post series summarizing each of Lilly's 17 months of life.  To learn more details about Lilly's daily life, just click the appropriate month and year of my Blog Archive on the right side.

January 4, 2011 - February 3, 2011

Making it to 6 months old is another huge milestone in the world of Trisomy 18!  Lilly continued to gain weight and made it to 8 pounds that month.  She measured at 22 inches long.  It was exciting to move her up from the preemie sized diapers to newborn sizes.  (I used cloth diapers on her during the day and disposables at night.)

I began trying different tapes on Lilly's face to hold the NG tube, as they were irritating her.  (I don't remember which one we ended up with.)

One of Lilly's "quirks" was sleeping with her eyes cracked open.  She did not always do this, but it was pretty regular.  I learned that was a "normal" Trisomy 18 thing.  (Some older T-18 children end up needing to get a procedure done on their eyes after sleeping like this for years.)

Since Lilly had all her feeds go directly to her tummy, we figured her mouth got dry at times.  So several times a day, we would soak a "sponge on a stick" with water and she would lick and chew it.  One day I discovered she really liked drinking through a syringe.  That made us both happy!

Most of January went well for Lilly though she did start getting a lot of congestion towards the end of the month.

Then one morning I woke up in the wee hours of dawn and realized Lilly's breathing didn't sound right at all.  We ended up in the emergency room.  (It was my first trip ever to one.)  I remember holding her and trying to explain to the doctor on call about what was wrong but he just kept staring at me and Lilly.  Then when I stopped speaking, he said "Are you sure she has Trisomy 18?"  and then "She's 6 month's old?!" then finally "Has anyone ever told you the prognosis of that disorder?"  Duh.  I remember feeling frustration mixed with triumph. Yes my daughter had full Trisomy 18 and WAS ALIVE!  But I was scared she wouldn't be for long if he didn't do something!

They finally got Lilly started on oxygen but the smallest mask they had was a too big so I had to hold it against her face.  Shortly after she was transferred to a hospital with a PICU.  (Special children's unit.)  Lilly and I traveled by ambulance.  I was terrified but admit I thought it was rather disappointing the driver didn't put on the siren as we traveled to the other hospital.

Lilly had a C-Pap mask on to get oxygen.  It helped immensely.  I called it her "fighter pilot" mask.

Through x-rays and tests we learned that Lilly most likely had some sort of virus.  Her heart and lungs had a lot of extra fluid in them and her heart had enlarged to a very large size.

Earlier today, as I was reading back through my blog posts from that time, I was very interested to read something I had forgotten about.  One doctor (not a cardiologist) at that hospital had told us that even if Lilly did get her VSD in her heart repaired, she could still die of heart failure.  Today I sat and thought about this.  We still don't know for sure why Lilly died.  (And she had had her VSD repaired by then.)  Frank personally thinks her heart just gave out.  Perhaps what this doctor had predicted did happen. 

To the all the doctors and nurses surprise, Lilly fought hard!  There were ups and downs but as she recovered, she even began to play Sneaky Lilly:

Lilly wound down her 6th month, still in the hospital.

Now that's a surprised look!
 "For he will command his angels concerning you to guard you in all your ways;" - Psalm 91:11

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