>> We went to our appointment, and I remember it was our ultrasound tech's first day.
She printed like 100 pictures.
I said, "This is so odd."
And [inaudible], and she came in, and she just hugged me and said, "We found a cleft lip."
And I just -- I started crying and just kind of looked at her
and fortunately my husband was with me.
And he just put his arms around me and at that point it was just a 2D ultrasound,
so there's only so much you can know.
And then the doctor came in and just confirmed, and it was just encouraging that there are
so many things that -- there are so many resources and so many things that can be done.
The tears and the anger subsided [inaudible].
I was just worried I was going to have create our own path and figure out all the appointments
and what do we do next, and it's all laid out for us.
They tell us what to do, and they help us decide what's best.
So that just took a lot of my fears and nervousness away.
And then once we sat down with Carolyn, she just had a huge basket of bottles
and different things that you use to kind of help the baby,
and she's just showing us how it worked.
And she normalized the process and encouraged us, and we're excited that we're having a baby.
This is our baby, and we're so thankful that we get to her parents,
and it's part of her story, part of our story.
I'm just thankful because I get to welcome her into our family.
[ Music ]
>> So today Jane is 4 weeks old, and this is our third kind of NAM appointment
where they're making adjustments and fitting the device.
So the NAM I think is the nasal alveolar mold.
It looks like a fancy word for retainer kind of is what it looks like,
and basically from what they've explained to us is
on the cleft side usually the alveolar segment or the gum line is kind of smashed down,
and they tend to build it up week over week to get it more in line.
And once they get those in line, then they start doing the nasal stent
and working on the shape of the nose.
So it was really the first week was getting her fitted and going home without the wire,
without the nasal stent and then on the second appointment, we came back
and they've been working on the nose since then, and now it's just a matter of kind
of shaping the nose and straightening the columella for surgery.
I felt pretty prepared.
It didn't seem like anything out of the ordinary from birth.
>> The biggest concern is always feeding and feeding [inaudible] right away.
So that was an issue.
We'll still be coming every Friday and having it adjusted
and then her surgery is scheduled for August 31.
The boys are loving her.
For a little bit, I think they were scared to see her face at first and so they were kind
of just peaking around and then the next day our 5-year-old came up to me.
He said, "I thought it was going to be a hole like this.
It's just like this.
I don't even notice it."
She comes home every week with different tapes and wires going on,
and they don't even -- it doesn't even phase them.
That's their little sister, and I think it'll probably be strange for them
when there's nothing on her face.
[ Music ]
>> So Jane is 3 months old.
The last time we talked, she's been doing great since then.
Feeding really well.
Sleeping really well, which is a huge benefit.
And yeah, pretty much just happy, happy baby.
Has two older brothers that love her, and really care for her, and she's getting really smiley
and giggly and cooing and talking to us.
She's been a lot of fun.
This was the lip repair.
So it's the first of our surgeries with the cleft
and basically they brought the two segments of her lip together,
and I guess they can either do a lip adhesion or lip repair.
This one was full repair.
Everything went really well.
It was about a four hour procedure.
She also had tubes put in her ears as well.
And yeah, they said everything went great, had a lot of tissue and there's no issues,
and Dr. Caston [assumed spelling] was very pleased with how those segments came together
and it looks a lot different then she used to.
She's still very beautiful, and I'm excited to see once we get all the stitches out, taken off.
It will be one night in the hospital.
We'll be going home today.
And we come back on Friday to get a couple of nylon stitches out and the rest
of the stitches are all dissolvable.
Next big surgery will be [inaudible] surgery.
And that should be between [inaudible].
So hopefully we'll just be enjoying her and getting stitches out and having her recover
and get her back to her normal self [inaudible].
[ Music ]
>> For the past two months, she learned to crawl and is pulling up and saying Mama
and just doing lots of fun 8, 9, 10-month-old things.
That's all we've been doing.
>> Today we're here for Jane's cleft palate repair.
It's about a four hour procedure.
My understanding is that we're repairing three different layers,
a layer of mucosa inside the nose, the muscle layer and then the mucosa inside the mouth
and they'll be closing that all up and so she'll have a solid [inaudible].
So I think we'll be admitted for tonight, assuming everything goes well,
get to go home tomorrow if there's no complications.
Then I think typical full recovery is two to three weeks is kind of my understanding.
>> This is her last scheduled surgery for the year, and I remember when she was still inside
of me just daydreaming about her first birthday,
just knowing that we would have the two surgeries behind us and have a few years off
and though I don't want to wish her first year away, I'm really excited to just know
that we don't have to deal with this for another few years at least.
[ Music ]
Jane just turned 1 years old a couple of weeks ago, which was really, really exciting.
First, I never thought that I would actually miss the hole in her palate,
but when she has her big belly laughs now and opens her mouth,
it was weird at first seeing an intact palate and not seeing this hole,
but then something was also just really exciting and fun is she could finally make a lot
of new noises that she hadn't been able to make before.
So that was really fun for us.
We videotaped it because she would just kind of sing at night to us
and just -- you can imitate if you want.
Just make all these sweet little babbling baby noises that we didn't get to hear
from her before her palate repair.
So that was something that was really special and exciting to get
to hear those noises for the first time.
>> And then it's kind of largely just been life with three kids at home.
Two boys that love to wrestle with her and play with her and she loves to chase them around
and slobber them and hang out with them, and they fight over playing with her.
So yeah, just kind of getting used to normal life again and life with few appointments now
so that's kind of been a welcome change.
>> Jane is delayed in her speech a little bit.
So she can right now just say Mama consistently, and they usually hope that within six weeks
after palate repair that they can say one new noise consistently like baba or dada.
We are continuing to work on Jane's speech and get her saying dada.
[ Music ]