Our God is Healer

There’s nothing like hearing your child sing songs of praise as you’re driving in the car. But even more so when just two weeks ago, she couldn’t “sing”.

Lizzie was singing,
“Our God is greater, our God is stronger
God you are higher than any other
Our God is Healer, Awesome in Power
Our God! Our God”

I wonder if she understands, in her own way, what those words mean for her?

Operation Pip Squeak (Part 3)

Silence is not always golden. So when she lost her voice again two weeks post Operation Pip Squeak Part Deux, she was really disappointed and frustated at having to start over again. But of course God is good and Dr. Maddern isn’t ready to give up and is still hiding a few tricks up his sleeve.

No matter how nervous she gets before going in for surgery or any procedure…she knows that she can always look forward to the goodies they give her!


By the time they get her checked-in, she forgets her nerves (and goodie) because her eyes are glued to her DS.


They always have the coolest gadgets at the hospital. Although I think only a family that have daily medical equipment in their home can appreciate the latest medical gear ;) Besides, if we really have to have equipment, they might as well be cool right??

This time around they put a Montgomery t-tube in place to keep her airway open and free from over-growth of scar tissue and granulomas. There’s pro’s and even more con’s to having a semi-permanent tube vs a regular trach in place but it did double her airway from 5.0 mm to 10.0 mm and allows her to talk!

Fortunately, this was a short trip! Hopefully part 4 won’t come too soon because I think we’re all tired for a little while. Oh and she was making sure to reprimand me for almost forgetting her DS in the hospital room….oops!

Before (with a regular trach):

After (with a t-tube and NO trach ties!):

Dr. Maddern and his team even worked on her bear’s trach. It’s got a bandage to prove it ;)

Operation Pip Squeak Part Duex

We finally got her stent out that was put in when she had her LTP with rib graft back in October. Taking the stent out meant complete access to the airway that Dr. Maddern had repaired. When he went in for the original surgery back in October, he found some scarring from being trached for so long but he also found a rare birth defect that would have eventually required her to be trached regardless of her preemie complications (She was born at 26 weeks, well really at 25 weeks and 3 or 4 days). He found she had complete tracheal rings in her lower airway that he had to slice open and repair in addition to his original planned rib graft procedure. The next few months of healing will really be important in determining success of the rib graft, repair of the tracheal rings, and future deccanulation (complete removal of the trach).

But in the mean time, we wait. We are so grateful and so thankful that God gave a beautiful voice to a beautiful little girl! The hubby took this video the day of the removal of the stent. Her voice quality today is different because there’s less swelling internally and she’s really having to learn ‘how’ to talk. Enjoy!

LTR/Rib Graft – Day 4 (Discharge)

Oh happy day! She was ready for discharge first thing in the morning, and boy was she so excited. The first 2 things she asked while we were packing up was:

1. Are they taking my IV out?
2. Do I get to see Kuya Ethan and Enzo?

She missed her brothers so much because visitors under 18 years old weren’t allowed to visit the PICU.


This huge smile…

was all for this…

LTR/Rib Graft – Day 3

Day 3 in the PICU was more a ‘hangout just to make sure everything is ok’ kind of day. The night before they did get rid of one IV site because it started bleeding so they just removed it since they really didn’t it anymore. However, when they went to use the second site for an antibiotic IV, it was a dud and they needed to get a new IV line going. Lizzie was not a happy camper about it.

Look at that face! She was so mad that she had to get another IV site and definitely was not pleased with the lineup on her counter. But 3 nurses later they (finally) found a working vein!

She got over it quickly with the TV constantly on!
I couldn’t even get her to look at me long enough for the picture.

LTR/Rib Graft – Day 2

The doctor decided to stop sedation meds first thing in the morning since she was doing so well. So for a while after, she was a bit loopy. I’m sure the pain meds didn’t help with the loopiness. =)

See the dried tears? This was a while after Edwin’s little fiasco with globs of dried blood and secretions while trying to find a nurse who knew how to suction a trach with a stent since Lizzie couldn’t cough it out. She was terrified (so was Edwin). Even at bedtime tonight she brought it up again!

*Note to ICU nurses: Really?? ummm you know you work in PICU where at some point will have a trach patient ;)

She was eventually up to walking around, watching TV, coloring and reading a book.

By the time dinner time came around she was already back to her usual smiling self! She was so bummed though that she couldn’t have Popeyes chicken yet (her all time favorite food) but she seriously devoured 2 baked chicken legs, mashed potatoes, corn, yogurt, applesauce, strawberries and she was looking for more food all within 15 mins!

Either she was STARVING since her last meal pre-op was arond 6:30pm Sunday night, or she’s so ready to get outta here!

Have I mentioned that God is sooo good? Thank you for all the prayers for Lizzie, the doctors/nurses and our family. Keep praying because God has done some pretty cool things during all of it!

LTR/Rib Graft – Day 1 (Surgery Day)

She was all smiles all weekend and even all morning, even when they took forever to call her back. I was ready to jump outta my skin with all the waiting and anticipation.

This picture was taken as they were walking her back to the OR. Right after this shot, fear kicked in and she panicked like I’ve never seen before. She was like a puppy chasing it’s own tail and she decided to ditch the doll because she didn’t know what to do with it.

3 1/2 hours later…

But look…no vent and no oxygen! Just a humidifier.

Pomp and Circumstance


Good morning sunshine! or is it? We shall see! Today is the last part of Enzo’s reevaluations for Occupational Therapy. He’s grown in every way and has worked hard to accomplish his goals. He’s been discharged from Speech and Physical Therapy  for a little while now, so this is the last leg for him. After today, he could be therapy-free!

He’s been all ‘therapied’ out for a long time now (not sure who’s more ‘therapied’ out, me or him). He loves his therapists though, esp his OT (so do I, so I’m not sure if I’m ready to discharge her). But since a month after coming home, that’s all he’s known…week in and week out. So this is long over due.

Although last week when we were talking about his reevaluation and graduating from OT, he was really bummed and said he wasn’t going to work hard next time. I’m hoping he forgets today =)

So…will we be marching to ‘Pomp and Circumstance‘?

…to be continued…