25 Days of Lillian (Day 8) A new home

We have been in prayer for well over a year in regards to finding a home for our family.  One that will suit Lillian's needs well.  We have found a place and we are working evenings over there trying to prepare for moving in.

So what do you do when the house is empty, everyone is working inside,and there is wet paint?  You go outside and "race" your little brother in your soon to be yard!

FYI- Running is not something Lillian is able to do a lot, but we were told she would need assistance to even walk unitl she was 8 or 9 years old.  It never gets old seeing her run.

PS- Q&;A time...if anyone has specific questions they'd like me to answer in a blog, post post them in a comment on my facebook post  and I'll make a post answering them. Apparently, people aren't able to comment here even though it's open posting.

Bj

25 Days of Lillian (Day7) How her life changed mine

How can I even put into words how I've changed?  I hope this doesn't come across in the wrong way.  I have joy.  I have happiness.  My faith is where these things are found.  BUT, a small piece of me is changed and will never be the same.  There is a seriousness about me that did not exist before and the  care free-ness that I once felt no longer exists.  

I have melt downs over feeding bags, missed appointments, and wet beds.  Things that really don't matter, but I think sometimes the heaviness of the load I carry comes out in those "little" things.  

I'm constantly praying to remain unjaded.  I have to remember that because I've dealt with more than the norm, that others struggle with the norm.  My compassion gets skewed sometimes.

Well meaning people with their well meaning thoughts, who don't have a clue what our life is like, give them grace  They just don't know..they don't live it.

Grace...giving people grace. I feel isolated.  A lot.  I've felt and been let down by friends and family. Give them grace and let go of the bitterness.  

I've learned to humbly accept the kindess and generosity of strangers, friends, and family and be incredibly grateful.

Confrontation has never been my strong suit, but living a life of fighting for so much for my child has made me fierce.  

I've learned that waiting grows patience. I've done a lot of waiting, friends...lots and lots of waiting.  Uncountable hours. Doesn't even bother my anymore...except sometimes in the drive thru. :)

Harsh as it may sound, it's true that my life is my life and people that I come to have to depend on are just doing a job.  There doesn't seem to be a whole lot of excellence in service anymore or even common courtesy. Professionals and nonprofessionals alike. This is something I experience almost daily.  I believe many other SN mothers could agree with me on this point.

I know as mothers we all have those moments where we feel like the day was a fail.  I experience that exponentially more when something happens with Lillian that could be prevented.

  I struggle with feeling the need for the everyday people in my life to understand, to truly understand.  Does that make sense?  There are several people I've only met through reading their blogs and I feel so close to them becuase I know they get it.  I think I have one IRL person that when I talk to her, I know she gets it.  Our tears speak in harmony.  

I have learned to never take anything for granted.  I can marvel and find joy in the smallest of things. 

I have found depth in the my walk with God that continually grows.  I see how he uses all these things to hopefully make me a better person.  More loving, more giving, more forgiving.   

I've learned that sometimes my life must be lived one moment at a time.  Minute by minute, hour by hour.  And that is ok.  Laundry will get done, floors will get mopped, dishes will be washed...eventually.  (not to say not getting those things done doesn't drive me crazy at times I'm just sometimes totally and completely overwhelmed)

I could likely go on and on.  So instead, I 'll share this picture, because I love her expression.  True essence of Lillian : JOY

25 Days of Lillian ( day 6) A little bit of her "medical" picture

CLD Chronic Lung Disease
CHD Congenital Heart Defect
PDA Hole in the heart
VSD hole in the heart
PFO hole in the heart
Coarc of the aorta
Trisomy 2p
Terminal deletion 4q - chromosome anomalies, that are entertwined
VUR vesicoureteral reflux (reflux in kidneys)
GERD (stomach reflux)
BPP brachial plexus palsy
CD ciliary dyskinesia
FTT failure to thrive
Feeding intolerance
asthma
PE tubes
T tubes
DD developemental delay
hydronephrosis (fluid around kidneys)
pulmonary hypertension (high blood pressure in the lungs)
cleft palate
thinning white matter in the brain
hypotonic (low tone)
seizure
blood transfusions
constipation/diarrhea
sensory issues

This is a list of most of the things Lillian is or has been diagnosed with.  Some of them are resolved, but most of them are what we deal with in her life. You know when you take your child for their well child visits and that giant list of things you get to say no to?   I get to mark yes on most all of them.

Surgeries

Trach
heart
PEG tube
multiple sets of ear tubes
multiple bronchoscopies..too many to give you a number
adenoids removed
chest tubes
3 ostomy closures
cleft palate repair
2nd palate surgery
She has been in surgery so many times I don't keep track of the number. I never have any type of comfort level when leaving my child in the hands of a surgeon. All I can do is pray.

Hopsitalized
Twice for pneumonia, once including pleural effusion and requiring a chest tube
4 times for severe respiratory viruses plus add in some strep pneumo and cdiff
mulitple times after operations

Procedures outside of surgery...tests upon tests, CT's, MRI's, XRAYS, ultrasounds, echos, ekgs, PFTS, again, things I can't even list because they are too numerous.

I've met more than my fair share of doctors.

25 Days of Lillian (day 5) A day in the life

I thought I might share what a typical day in the life for Lillian is. (Note, this ditl changes dramatically if she is sick...)

Her feeding pump goes off  some time between 4 and 6 am. If I wake up right away, the chances are it doesn't disturb her.

She wakes up between 7 and 8 crying for me because she's afraid. She is strapped to her feeding bag which is plugged in so she can't get to me.  (note, when we move we will be in a home with our bedrooms on the main floor! woohoo)

She gets an albuterol nebulized, pulmicort, nebulized, and IV antibitotic nebulized.

Come down stairs, potty again in prep for the vest machine.  To which she's terrified if I'm not sitting right beside her.  So 20 minutes later....that event is over.

She plays for a bit while I prep her formula and new feeding bag.  By 11 she's hooked up to the feeding bag for 40 minutes (i've gotten her down from an hour just recently) She get's tube feedings at 11, 3, and 7, then on a night drip for the entire night.

She mostly spends the day playing with her kitchen, a little bit with the mini ipad and some educcation sprinkled through out the day.  I attempt trying to get her to eat at each meal.  We try to build in therapy type activites throughout the day as well.

If the weather is nice, we spend a little time outside where she is likely to be found in her playhouse daddy built for her.

By 5pm we are back to the vest for 20 minutes.

By 9 she's headed back up to bed for breathing treatment and sleep comes eventually.

 Due to her medical fragility and immunity disorder she can't spend time around other kids.  She can't attend school or be in groups with other kids because she ALWAYS gets sick when we do it.  We stay away from playgrounds due to her low tone and small stature.  She's not able to keep herself from getting knocked around or off of play ground equipment. Our home is Lillian's refuge and this is what a day in her life looks like.

25 Days of Lillian (day 4) This girl loves....

Lillian has a few things that she really really really loves.  (me of course...LOL) Seriously, though, I thought I'd share a few of her favorite things.

1. This girl loves her toy kitchen.  If I had my way,  I'd have her a whole organized play center with a bigger toy oven and cabinets...like a play center.  She LOVES to "cook" and organize her foods and dishes. She even loves watching cooking shows, her favorite is Pioneer Woman.  It cracks me up that she will watch her from start to finish.

2.  She LOVES wearing dresses and skirts.  It is so difficult to find things that fit her well in that arena...but we recently found some tiny maxi skirts at Target and she LOVES them.  we got 4/5 and they still fall off her waist, but she adores them.  She loves shoes and would love to wear heels. She told me the other day she liked some business woman's high heels...what a hoot.

3.  She loves babies.  She doesn't play with babies a ton, but she loves to interact with  younger kiddos, especially babies.

4. Mountain dew addict.  Go ahead and judge me.  It's ok

5. She's obsessed with bags and purses, she probably gets that from me. :)

6. Her siblings.  That's a given.  She loves them whole heartedly and it is precious. Her little brother might now be her fave...they are best friends and arch enemies at times too.

Here she is in one of her beloved skirts.  Look at that smile.

25 Days of Lillian (day 3)

This girl...she's so funny...and sweet...and loving.  Many times I share the difficulties of her being delayed or not age appropriate.  It doesn't strike me so much until I'm around a child her age and the delay is very profound. BUT...let me share a more age appropriate story with you...

I needed a few, specific items from Walmart and I thought I could manage to run in and grab them with the two of them.  (the littles I call them).  As soon as we got in the store, she "nee foo".  Which means she wants to look at the toy food.  So, I think, a quick trip through the toys and I can get what I need after and everyone is happy.  Note, we do not buy toy food at walmart as it is pretty junky.  She knows that, we go through it every time we go.  She looks at everything and I decide it is time to move on.  We get back to the craft section and she slouches her shoulders and starts telling me "I boor" translation, "I"m bored".  Followed by, "thi booin" translation "this is boring".  SO, through the rest of the store, all I hear is big sighs followed by "i boor" and "thi booin"

All I could think was, well this is great followed by wow, this is so age appropriate.  That in turn allows me to not be annoyed and slightly entertained.

Side note to this story, what wasn't so entertaining...her little brother had gotten spooked in the store and between her "bein boor" he was crying pitifully and saying "i rea-eee" "no" "no" "no" " i rea--eey"

Did not get all my specified items in walmart that day.  Just sayin'.

And this is what I get when she is making cute poses and I ask her to take a picture...not cute poses.. But oh so age appropriate I'm thinking...

25 Days of Lillian (Day 2) When they tell you she will die

So many decisions had to made about Lillian's care.  Prior to her trach surgery, I asked the team if that was the only option.  I don't think I'll forget his response, he said, " well, yes, the other option is to do nothing...as in let her go".  Some of those days haunt me.  As I think about the amount she has suffered physically and what she's been subjected to, I use to beat myself up wondering if I had selfishly chosen a life of struggle for her.  We were told she would die by age one or two.  That first year, I was in total survival mode, Matt was working long, long hours, I was up around the clock taking care of her, and I really don't know how I managed to get my then small children fed and out the door to school.  I don't remember a lot about that first year.  It makes me sad.  Madeline was only four and I remember so little.  I literally did not get any sleep.    Her first return visit to the hospital she was in severe respiratory distress, I was scared.  That happened two months before her first birthday.
 When they told us she would be mentally retarded and die, all I kept thinking about was, what have we done to our kids?  what will we tell the kids?  how can we prepare our kids?

Oddly, it seems like it  gets harder for me each time she gets sick.  It's difficult, when in the back of my mind I wonder if this sickness will be "it".  How much can a tiny body take and still keep going?

This little girl, though?  She gets weak, she gets very weak, but she bounces back.  It takes her a while, but she does.

I wonder when I hear about people who lose their babies, their normal, healthy babies, why??  Why has our daughter been spared and theirs have not and I have guilt.  Which is CUH-RAY-ZAY.

I mourn deeply for people who lose their children, their special babies.  Their sick babies.
y
People, in their need to comfort you, tell you, "none of us is guaranteed tomorrow".  Let me just set you straight from my perspecive...that DON"T help. period.

I love all my children the same, but I have fought like nothing I can describe for my Lillian.  Because that's why what you do when they tell you she will die. You fight, you love, you cry, repeat repeat repeat. infinity. That's me anyway.