1/25 - update on the past few days

I've been sleeping instead of daily updating, but want to share some of the cute Annelise pictures with you all from the past couple days!  We had another OT session, and Annelise's goals are holding onto little toys in her hand for as long as possible, and practicing sitting up and getting control of that noggin and neck.  The OT was impressed with her eye contact.  She loves looking at faces😍 and lights.
This girl picked up drooling as a skill this week.  We are so blessed to get hand me downs from our friends right when we need them.  We have plenty of adorable bibs from our big girl twinsie friends who don't need them anymore!
Our daytime nurse will be out for the next 6 weeks.  We are hopefully getting a long term replacement... but time will tell if that will pan out.  In the meantime, Annelise has a wonderful village of people willing to sacrifice their time to get her to her appointments.  It is humbling and beautiful how our church family and friends love and show up for our girl🥰
She is thriving at home.  Her health is so fragile in nature, that I know this won't be how it is for all time, but we are determined to get as much joy as possible from these times of wellness.  God has gifted us big time with His baby Annelise.

1/19/2020 - Not so lazy Sunday

My husband is amazing!  I asked for something with pvc pipe to hang things over Annelise's crib so she can work on reaching for stuff.... and the project quickly morphed to a full canopy to keep the recessed lighting out of her eyes.  (You think recessed lighting is so wonderful until you have a baby staring up at multiple spotlights in the evenings!)  He is so handy, he just went to home depot and then whipped this up in no time! I am so impressed with the outcome and love that we have a place for her star lights that were with her in the NICU.
❤😍❤

Q

1/18/20- Saturday and a new G-button at home

This girl has me speechless.  Can't believe how much love she has in her and how much love I have for her!  We are so lucky to have her sweet soul home with us. 
Today her g-button came loose, but the back-up button that we had at home was too big for her.  Well, we already had some friends stopping by who have a big bad 4-year-old who also has Trisomy 18 and a gbutton.  They gave us a more appropriately sized hand-me-down brand new g-button that their son has outgrown!  Also got some pro tips that made us feel more confident to change her g button at home, instead of waiting for Monday so the doctor could do it. We put in the new one, and it is working perfectly!  Thank you Lord for orchestrating this morning's g-button coaching.  Always an adventure with this girl!

I have no idea what the date is today! Annelise had her first OT session

Annelise had her first OT session today!  I was excited, but didn't take any photos because I was too busy hovering wondering all of the things relevant and then some....if the OT took me seriously when I said Annelise is at risk for brittle bones so please be gentle with those fingers.... gentle!  And she's so close to her face checking out her eye tracking... I asked if anyone around her was sick... but didn't ask if she had her flu shot, shoot!  Where have those toys been...can I wash those toys for her please before you use them?  Oh my... new mom meets new mom just home from a month in the hospital.  I am glad I let her in the door, and she was a great sport. 
We got some homework to work on holding items and different textures.  This is the fun part!  The goal is for her to use her hands on purpose.  She doesn't quite know what they are there for yet... but a new thing she had started to do this week is move her hand to feel textures.  She loves her soft blankets, and also the shaved hair growing on the side of her head is a favorite she keeps exploring.😊
I haven't decided if I'm going to geek out and make a data sheet for her to track her progress.😆

1/14/20 happy to be home

1/13/20 homeward bound!

Getting ready to go home!!

1/11/20 - another stitch

Annelise got another stitch to go along with the one from yesterday, and that seems to have stopped the CSF from leaking.  They expect this to be the fix for the problem.... she is being watched... at some point they will stop the antibiotics, remove her picc line, and then they'll tell us to go home!

I haven't updated until now because I have been getting some glorious sleep!  I'm so grateful for Kevin!  Annelise and I often sit and think about

how lucky we are to have him be our person. 🥰🥰

1/10/20 7 months!

Weeeeeell it wasn't the most restful day.  Annelise had the surgery site dressing on her head changed overnight because it was bleeding more than they wanted... and it slowly kept on coming today.  We had to wait for the surgeon to make his way to her bedside, where he gave her a pressure dressing on her head, wrapped her in a snazzy turban, and then stitched up a different hole that was draining cerebrospinal fluid 😳 They decided to keep her on her heavy duty antibiotics for just a little longer, since all of today was a risk for infection. What a way to spend the day for this
SEVEN MONTH OLD!  YES! SEVEN!🥳
She slept most of the day away thanks to pain meds, but this evening we gave her a bath and I get to carefully cuddle her.  Her surgeon will be back tomorrow to check on her healing.
This is our last hurdle before we check outta here and go hoooooome!.❤
Love this baby girl!

1/9/20 shunt round two in progress

1:30 PM update: She is out!  Surgery went well.  The surgeon didn't like the look of her original shunt site, so her new shunt is behind her left ear instead of her right.  Wr have a bald baby, but that will mean all the hair grows back at one length!
She came back to her room breathing on her own.  This time I worked with the nurse to prepare her meds and get them ordered ahead of time, and she did end up needing them quickly because she woke up quickly again this time.  I'm currently holding her in my arms, and we are watching Monsters University on the hospital TV.  Let the healing commence!  Thank you Lord for seeing this little one through another surgery and strengthening her spirit so she can rock this recovery!


Noon update: Just went back to the OR!

10am update: We are still waiting for Annelise to go back for surgery.  There was a more emergent surgery that our neurosurgeon was needed for this morning, so we are waiting for him to finish up with that person and then it will be Annelise's turn!
She has her days and nights all flipped around right now, so she is sleeping peacefully, since the sun came up.  She had her first routine abdominal ultrasound this morning (kids with T18 have a higher prevalence of hepatoblastoma/liver cancer, so we are screening her to catch anything that might ever show up early. No reason to think she has any liver issues at this point) as soon as the tech put the warm US jelly on her belly, she knocked out and was sound asleep!😆
This morning. Her sleeping heart rate dipped lower and stayed lower than it has ever.  The doctors are aware, and her cardiologist is the one who is rounding at the hospital this week thankfully, so he will be consulted, but they don't think it's an indication of a new problem, since she historically does have heart rate dips when she is sleeping, and she can be easily roused, everything else looks good about her.  She's so smiley!
I have been re-learning the lesson that trusting God doesn't mean trusting God as long as He does just what I want Him to... but it goes along with recognizing that the Lord is the one in control, not me, and if I spend any amount of time thinking about the order of things... that's exactly how I want it to be.  The peace comes in the letting go of the things I just can't control... the list of things that I can't control is quite extensive.  There have been a lot of learning opportunities in the past few days where I've had the choice to trust or try to take control.  What I know about learning opportunities from all my years working with behavior analysts is, that the more you have, the more chance you've got to really learn it!  I feel like this was a very big week for shaping my soul. Counseling came in the form of a fantastic attending doctor who took the time to talk about personality types, medicine, and goals for quality of life with Annelise.  Basically, do I want to know as much as the respiratory therapists do, or do I want to know what can work for Annelise, even if I don't fully understand the theory behind it, and then move on and enjoy time with her, rather than research the respiratory system that is super complicated and will never result in me having the perfect answer for her breathing needs?  It was a relief of a perspective shift after talking with him.
While waiting, we got to share Annelise with a group of touring training EMT's!  It was so fun to talk about Annelise with them, and they were so curious as to how they can best help her.  I hope this little exposure to a baby with a trach and gtube will help shape their questions and learning as they finish up their EMT training.