Sweet day

This morning was spent giggling with Lydia, this afternoon was spent loving on Penny, and this evening was spent giggling with Lydia again.  It's a great day.

Lydia continues to impress me with what she can do.  She's sitting up with a little support, loves to stand up and see the world from a different perspective, is reaching for things and pulling them towards her, is starting to get the concept of turn taking in talking, smiles more often than not, and is just downright adorable.  Here's a video of Lydia and her Pappaw having a "conversation" this morning.

 

 

"What? I'm just holding my bottle. Stop looking at me like that!"

Penelope just keeps getting stronger every day.  There is still some healing to do from the surgery before she's full throttle Penny again, but I can see her in there more every day.  It's strange for a mom to think of her child having been sedated for almost an entire month.  It really does feel like I haven't seen her in that long.  Today, I saw her.  She looked at me with just a little bit of narcotics in her eyes and it made my heart sing.  I pray that that's the last time I ever say a sentence like that, but today it's true.  As of tomorrow afternoon she will be completely on her weaning medicines (methadone and ativan which will be tapered off over weeks or even months based on how dependent her body has become on the drugs.  We can bring her home on these though so they shouldn't be a complicating factor.  They've started veeeeery slowly weaning the ventilator, but I have high hopes that she will come off of it.  I could be setting myself up for disappointment but it's not the first or the last time.  I heard a quote from a movie recently that I think I will adopt. "Optimism is sanity for me right now."  I couldn't have said it better myself.

 "Hey, you look familiar"

 snuggles

She's been swaddled up so long to keep her from pulling on her tube that I'm sure it feels amazing just to get her hand to her face.  Sweet baby.

A couple of people have asked for some more details about what the trach means for us.  It's definitely a lifestyle change.  The major reason is that the trach needs regular suctioning to keep her airway clear. Also, if it gets clogged up then it has to be taking out and replaced, so that takes some training.  Because the nose and mouth are bypassed for breathing, so are the filtration of air and humidification they provide.  So, she'll need constant humidity via tubing or a fancy little thing that attaches to the trach called a humidivent.  Because she needs all this care available any time, there are a good many more things we'll need to carry with us everywhere we go.  I'm considering adopting a mule and just packing it with all of our stuff.  The trach is below where her vocal cords are so it might block all of the air from getting to her vocal cords which means that she may not be able to make sound.  Oh she'll makes sounds, but most of them will be darth vador type breathing sounds. I'm talking about crying, cooing, talking type sounds.  It's possible that she will, but I'm preparing myself for the fact that she may not.  This will mean that it will take a lot more vigilance to make sure that she gets what she needs.  If Lydia needs something it's pretty easy to tell because she grunts or cries or something.  Penny won't have that.  I've already started working on signs with Lydia (surprise surprise) so it'll be more natural to do it with Penny once she's coherent.  

Because of this higher level of care needed, she'll have in home nursing care for at least 16 hours a day.  This will give me 8 hours to work and 8 hours to sleep.  I'm so grateful for this I could burst.   Although it will take some adjustment having a stranger in my house regularly.  I'd rather have my baby and a stranger than neither.  I start back to work in about 3 weeks...oh my goodness...I guess I'm still having fun because time is flying! I think that's all the basic information.  Feel free to ask if you have any more questions.  The more people who understand, the less of a big deal it will be, and the more normal Penny's life can be.

She'll need the trach for as long as her lungs need a little extra help.  Right now she's on the vent but as I mentioned before there's a chance she can come off of it.  She'll still keep the trach in place because breathing through the distance between the trach and the mouth requires 80% more energy.  Crazy I know.  So breathing through the trach takes only 20% of the energy that regular breathing takes.  This is why it's so good for her because it requires less energy, burns fewer calories, and will allow her to grow at her maximum potential.  Once she's able to take on that extra 80% then we'll have it closed.  Because the lungs grow until you're 7 or 8, this could be months, but most likely a few years.  She'll probably be young enough that she won't remember any of it and the scar will be pretty small.  We'll see how our little fighter does.

Specific Prayer

• Healing for Penelope from her surgery
• Quick weaning from the ventilator
• No complications from weaning off of the sedation
• Lydia's continued development and protection
• Sweet reunion for them once Penny is out of ICU
• Comfort for Jonathan while he's away
• Comfort for me while he's away
• Praise for every tiny and huge way the Lord is providing for us
• Wisdom as we make childcare decisions