Wednesday, January 22, 2014

10 Years Ago They Fixed Her Broken Heart

Lily was certainly a chunky little cherub when she was born.  Smoochable cheeks and rolls of fat were aplenty on her body.  She weighed 7 lbs. 6 ounces at her birth (11 days early) and appeared very healthy.  Little did we know what was really going on inside her itty bitty body. But by the time she came home, we knew she was one sick little girl despite her healthy appearance. Over the next 4 months, I took lots of pictures, which now I can see, her subtle decline.  Her little heart was working overtime with a significant heart defect common in children with Down syndrome that in the end needed to be repaired sooner than later.

3 days old
3 days old
4 days old and first day home
When Lily was around 3 to 4 weeks old we had a mini crisis.  She'd grown very weak and couldn't nurse anymore.  She'd become jaundiced soon after her birth and still had quite a yellow hue almost a month later.  Having a heart defect and being jaundiced was just too exhausting for her.  She was hospitalized and we had to learn how to insert an NG tube (Nasogastric intubation) to feed her my milk because she didn't have the strength to nurse. Matt became quite proficient inserting and removing Lily's tube.  I just cried as Lily cried and was pretty much useless.  :(  We needed to get the jaundice out of her system as quickly as possible and feeding her via the NG tube helped expedite it's removal so it wasn't something we could avoid.  Once she was clear of jaundice, she regained enough strength to breastfeed again and not long after the picture below was taken we were able to remove the NG tube and let her nurse full time.  The bigger problem though was she wasn't gaining any weight.

2 months old with her NG tube
Early on soon after her birth her cardiologist described her heart as always in a state of exercise due to its abnormal design and inability to function properly.  I used lie next to Lily in bed and watch her sleeping while her little body rocked from the force of her short quick breaths and racing heart.  It was quite alarming and I often feared she'd die in her sleep.

Just over 2 months old -first smiles finally
First family pictures
3 months old
3 1/2 months old
You may be wondering why they didn't just surgically fix Lily's heart at birth.  Well, Lily had a heart defect that most surgeons prefer the baby to be a year old or at least 12 pounds before performing the surgery because the bigger the baby the bigger the heart to work on.  Lily was neither.

So due to her lack of weight gain, her refusal to take a bottle so we could supplement my breast milk with additional calories and our refusal to surgically place a feeding tube per our Cardiologist's recommendation (He feared we'd never get her on solid foods due to her already obvious oral aversions), we went ahead and scheduled her for surgery.  Our Cardiologist basically said we were just waiting for something bad to happen at that point.  It really wasn't a hard decision due to how frail Lily had become.  Her skin was translucent with several blue veins prominently showing through and not an ounce of fat could be found on her.  Her heart was working overtime at such a fast rate mostly because the oxygenated blood was mixing with non-oxygenated blood.  She was also on Lasix to lesson high blood pressure and edema. It was an awfully frightening situation.

Almost 4 months old about 3 weeks before her open heart surgery.

I don't have any pictures from Lily's 2 week stay at Riley Hospital For Children in January 2004 for her AV-Canal congenital heart defect repair and recovery.  Open heart surgery scared the living daylights out of me and I personally didn't relish having any visual memories of Lily during that time.

It was a conscious decision on my part mostly due to when the twins (Reagan and Kaelan) were born 5 weeks prematurely.  We took so many pictures of them during their 2 1/2 week stay in the NICU at St. Vincent Hospital.  Those same pictures take me back to a helpless time where I had little control over their care and was essentially at the mercy of a bunch of strangers. "Don't touch him there because he will feel pain", "Hold him like this", "Feed him like that", "Rub his back gently to help him remember to breathe"... Alarms went off constantly from the many wires attached to their tiny skinny bodies and we went back and forth between the two Isolettes (incubators) thinking one or both were going to die.  I honestly believe I developed a form of PTSD (Post Traumatic Stress Disorder) during that time.  You don't live through a life or death event involving your child without being traumatized in some form or another even if they do fully recover.

As for Lily's surgery, the memories are burned on my brain with how terrifying it was to hand off my tiny 4 1/2 month old 8 pound (Remember she weighed 7 lbs. 6 ozs at birth) baby girl for her open heart surgery.  I don't need a visual to remember how distressful it was to see multiple tubes and wires attached all over her body, her drug induced paralysis nor how horribly swollen Lily looked those first few days after her surgery.  I seriously thought they brought us to the wrong baby's room because the baby covered in wires, tubes and bandages certainly didn't resemble my angel girl I'd entrusted into their care just hours earlier.

But I sit here in amazement thinking back to that time.  Our anxieties, our dread and our hope intermingled into one thought:  Please just fix her.

After a 5 hour surgery by the highly skilled and talented Cardio-Thoracic surgeon Dr. John Brown, Lily's heart was repaired.  A big bonus was they were able to do the repair on her heart without any man-made material.  That in itself was a miracle due to the size of hole she had between the bottom two chambers.  One little God given safety net for these kiddos with Down syndrome is usually they have extra pericardium to help repair their defects.  She also escaped the need for a pacemaker that we'd been told was a possibility.  Her recovery overall was quite quick all things considered.

Lily came home 2 weeks after her ordeal with a tiny 3 inch white sliver of a scar.  It was quite the celebration!  She quickly started gaining weight and strength.  And she was oh so full of life.  :)

Lily 6 months old.  
I feel SOOOO much better!!!
6 1/2 months old -starting to fill out
Lily just over 7 months old
Ooooohhh I love these feet.  Finally strong enough to play with them! -9 months old

1 year old.  

Miss chubby cheeks is back! 

A little over a year after her heart surgery.
Now ten years later, Lily is doing wonderfully.  She just had a echocardiogram (ultrasound) on her heart in November and an EKG.  Her new Cardiologist gave her a glowing report saying everything looked great and he didn't need to see her for 18 months.  That was music to our ears.  It had been a three years since we'd gotten an echo of Lily's heart and that was with her fighting the entire time.  This time she was out under anesthesia so we know they got a good look at her heart.  Our biggest concern is that her valves stay in good shape.  They had to create 2 valves out of the 1 valve she was born with and so far she has minimal leakage, which is a normal result of a valve repair.  Her risk rises for needing open heart surgery on the valves as she approaches puberty so we are praying her heart stays healthy, but so incredibly grateful they fixed my Lily Lu's broken heart.


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