The appointment with Serena went okay yesterday. Minus the fact that there were no handicap parking space and that they took over 2 hours to see her because they "forgot" to give the woman who was calling the appointments her chart, things weren't too bad.
I really liked the ENT. He is very intelligent and very personalable. They scoped her and found that her left vocal cord does not move when she is crying. He also noticed that her airway is quite narrow (due to her long period of intubation). This summer Serena will undergo a bronchoscopy (anesthesia required) to determine what is causing the vocal cord problem. It could be the nerve was damaged during her PDA ligation (a risk we knew about) or subglottis stenosis. I'm not going to stress about what it is and what can be done to fix it until we see the ENT in July and figure out exactly what is going on. She also has a modified barrium swallow scheduled for next month and that will give us more information about the anatomy of her airway.
I mentioned to the ENT Edwin's reflux and labored breathing when he seemed to focus on these questions regarding Serena. Long story short, Champ will also undergo a barium swallow and a bronchoscopy. He also may have an upper GI done depending on how his barrium swallow goes.
I just spoke with their pulmonologist. We are going to continue the wean schedule with every other week down by 50ccs. When Serena gets to 2 weeks at 100 ccs, we will begin talking about taking her off O2 for periods of time throughout the day...exciting. Edwin still has a ways to go but he tolerated his last wean wonderfully. I am very pleased at how well they are doing respiratory wise.
In nonmedical news, the little ones are doing well. They are smiling so much now...it's amazing. Edwin is cooing up a storm, and I know Serena tries but can't because of her vocal cord issue. Both are very interested in their newest toy.
It's the Fisher Price Sensory Selections Bouncer. Here is a description from the Fisher Price website:
"All babies can benefit from all kinds of sensory stimulation. But not all bouncers let you choose which senses you want to stimulate for baby. The Sensory Selections Bouncer does! You can customize it to stimulate baby’s sight with the overhead motorized mobile, baby’s hearing with music and sound effects, or baby’s sense of touch with the bouncer’s textured toys that are right within baby’s reach. Or, select any combination of stimulating features for baby — or all three! Then, just flip the mobile, toys and speakers out of the way when it’s time for baby to relax. Baby will find this bouncer oh, so comfy, too, with soothing vibrations and a new “bucket” seat."
All in all the thing is cool and the kids love it, especially Champ, who seems especially impressed with toys that light up and play music...Serena is more of a cuddler and sleeper.
We were also so taken aback by the generosity of the members of a church that one of our nurses belongs to. They purchased TONS of diapers for the twins and made a committment to continue to buy their diapers for an entire year! We are so humbled by their kindness. Apparently, each member of the church was given $100 to do something to help another. Our nurse talked about the struggles they went through in the NICU and the difficult life and death decisions we had to make. They were taken by our story and reached out in kindness (Our nurse also showed thema picture of the twins...I'm certain this played a role :) )Anyway, we met with two of the church memebers who brought the diapers, and it was so nice. We will hopefully bring them to church to meet the kind people soon...I am kind of worried about doing it this weekend because RSV season isn't over and Edwin Sr is fighting off a cold...we are praying the babies don't get sick!
Well Serena is crying so I leave you with some pictures of my cuties.
A better picture of Champ smiling!
Our brwn eyed girl hanging out in brother's bed!
His hair is finally getting a little darker!
Serena in her new seat!
My "big" little girl
Focussed
Champ is very serious about his new seat
1 comment:
Oh, I got the chills when I read about the church donating to your family! That is such a kind thing they have committed to do, and they picked a great family to help!
As always, the kids look adorable. They look like they are getting big!
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