March for Babies, Here We Come!

We had shirts made this year which we were excited to sport.  The girls enjoyed matching their Mommy and Daddy.

Here is our "before" shot. . .

March of Dimes

We are going to pound the pavement next Saturday in order to raise money and awareness for the March of Dimes.  Their organization played direct role in the twins' lives.  Without their contributions that funded the research for surfactant, my Adeline would not be with us today.  The same could have been true for Lila Grace.  I sit here today and try to imagine my world without my baby girls.  I can't wrap my head around how devastating that world would be.

I remember very little of Adeline's birth - my eyes were closed until she was out and being worked on by the NICU doctors.  I wanted to see her but all I saw was more than twenty pairs of scrubs surrounding my one pound baby.  I kept repeating, "She has a name.  Please God, let her live, she has a name."  She was my baby, a life, a life that I so desperately wanted to live.  While I was chanting my incoherent thoughts, Dr. Chang was ventilating my baby girl and administering surfactant inside her tiny lungs.

By the grace of God and modern day research, both of my girls are alive and thriving.  We are the lucky ones.  I don't know why we were chosen to carry our babies out of the NICU when so many others never get to take their babies home.  I struggle with this thought frequently.

As we gear up for our walk next weekend, please feel free to join in.  There is a fund raising button on the side of this blog.  A big thanks to our very generous donors thus far.  We would love for you to lift us up next weekend as we walk.  It is an emotional experience.  It is a time when we are forced to face what "could have been" which leaves me holding my girls close to me while my heart swells with gratitude.

Here is our story. . .

Sisterly Love

I dropped Adeline at Sunday School first today while Alex took Lila to the bathroom. When walking Lila into Sunday School, she seemed hesitant. Possibly, because Adeline was already in and settled in a chair. When I directed Lila Grace to sit down, she told me, "No, I want to snuggle my sister." She then snuggled up to Adeline and put her head on her shoulder. Adeline responded with, "Lila Grace, you sit right there." Lila reiterated to Adeline that she wanted to snuggle her. So. . . Adeline, the one who doesn't like a lot of touch from siblings or friends, kept on coloring while Lila was attached to her side. It was very sweet.

Why Boys Don't Wear Shirts

Luckily this conversation happened in the car. I didn't have to look Savannah in the eye which helped hide my embarrassment.

S: Why do boys take their shirts off when the exercise outside?

Me: The don't always. (trying to avoid)

S: But why do they do it sometimes?

Me: So that they don't get too hot. (still trying to avoid)

S: How come they can do it but girls can't?

Me: (Is she really asking me this. Hmm. . . do I tell her the truth. Deep breath) Sweetie, have you ever heard anyone mention the word breasts or boobs?

S: No

Me: (Thinking I could have used a little help here from Savannah's friend department.) Well when girls get older, their breast start to grow and that is why Mommies wear bras. (Am I really talking about this with my 6 year old?) Do you know what I am talking about?

S: Yes. Why do you have to wear a bra when your breasts grow?

Me: (Thinking that my lack of a rack doesn't help in the support explanation) Well, women don't want people to see their breasts and bras help keep them covered up.

S: But I still don't know why don't boys have to keep their shirts on?

Me: They don't grow breasts. The reason why girls don't take their shirts off is because that part of our bodies is considered a private part. Did you know that?

S: Yes, like no one should see it or touch it except your family like when you are changing clothes or something.

Me: Yes, that is right. So boys can take their shirts off because that isn't considered a private part of their body.

S: Well why can they take their shirts off when exercising outside but not when they are exercising inside at the Y?

Me: I don't know, that is just the way it is. (always taking it one step further so that I can't give a good answer on the spot)

I guess I can check off one of many uncomfortable conversations I will have my girls.

Off the O's and Outside

This past weekend was beautiful.  Luckily, Adeline came off of the oxygen which allowed us to spend much of our time outdoors.  I am not sure it was her favorite place to be but the rest of us truly enjoyed it.  Ever since Adeline has been sick, her sensory issues have been on the rise.  It is amazing how she just turned into a different kid, the kid we had over a year ago.  She can't stand the sound of cars and, especially, lawn mowers.  Every time we take her outside she crawls up our leg growling until we hold her.  Then she says in her meek voice, "Lawn mower not get me."   She doesn't enjoy her out door toys either.  This has decreased her independence tremendously - I am back to holding her every second we are outside.  She has also demonstrated increased sensory issues in the house.  All of the sudden she hates sitting on the stools at the island and requests to be place in her highchair (she still eats in one for the support of a 90-90-90 degree position which is hard for her to maintain when eating due to her low tone).  She screams, "Lila not fall," when she sees Lila squirming around on the stool.  I don't know what do about it since she has been fine with all of the above activities for quite some time.  It seems like one day she woke up with a lung infection and and super intense sensory issues at the same time.  It is very FRUSTRATING!


Back to the more positive side of this weekend. . . time outdoor with friends, downtime in the house as a family unit, and cupcakes galore.  

The Never Ending Lung Infection

This has been a tough month for Adeline.  Earlier this week when I was putting her to bed, she threw a huge fit because I wouldn't put the pulse ox on her.  She doesn't typically sleep with it and I just assumed she was trying to buy time.  Fed up, I gave in and wouldn't you know it. . . she was 88!  That's well below a saturation of 95.  I was dumbfounded.  Did she know she needed oxygen?  Was she trying to tell me?  I don't know, but, in either case, the oxgen was pulled out and she has been hooked up ever since.

I took her to her pulmonologist on Wednesday and it looks like her lung infection was never resolved.  Her x-ray was clearly worse.  I asked why she is going back and forth with the oxygen when she has been off of it for over a year.  He believes Adeline has low reserve.  We knew this when she was younger as it always took her longer to bounce back from any illness.  Now that she is bigger, she is typically able to fight an illness.  This lung infection is unique and demonstrates her lower reserve.  She has not only been hit by the infection but is also fighting the virus that caused the croup and a double ear infection.  When she initially got the lung infection, she had been fighting a cold on and off for a month.  She hasn't been extremely sick this winter (until now) but hasn't been exceptionally well either.  Eventually, her reserve was depleted and she succumbed to this infection.  Maybe this is why April is ALWAYS our worst month.  Maybe, fighting viruses all winter leaves Miss Adeline with nothing left to fight with come the end of the winter.   And for this family, the end of the winter is always when we are slammed with viruses.

Sayings around the House

Adeline. . .

Me:  What makes milk?

A:  Cows

Me:  What do bees make?

A:  Honey


Me:  What makes eggs?


A:  Easter Bunny Rabbit



As I was putting her sock on to keep her Pulse Ox probe in place Adeline said, "That's my pulse sock."  (meaning the sock)


When Dr.  Chidekel was listening to her lungs from the back. . . "Dr. Chidekel, rub my back."




Lila. . .


Me:  Look Lila, that is Daddy's Daddy.


L:  No, giggle giggle


Me:  That is Daddy's Mommy.


L:  No way! giggle giggle




When going to the bathroom and experiencing some diarrhea. . .

L:  Mommy, come here.  I need hugs!


M:  No, Lila.  You can go poop by yourself.


L:  But I scared of my poop Mommy.