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.
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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.

25 Days of Lillian, Day 1, (the FIRST 25 days)

As Lillian approaches her birthday, I thought it would be fun to share her life with you.  I know I do that in bits and pieces and much of her life's battles are documented in this blog, but - for those that may just be stopping by or haven't had the time to read almost nine years of life maybe I can do some brief overviewing.

The day before she was born, we celebrated Thanksgiving with Matt's sister Rita.  She, along with her daughter, had made dinner for us.  We had recently lost our home, I was on bedrest, and we had moved into a new place.  The next morning I was going to the hospital to have some procedures done.  All of that threw me into labor, and she was born in the evening on the 25th of November. Most people know, once somewhat stable, she was whisked away to the Children's hospital.  In that early morning, I a wakened in a hospital room, alone, no husband, no baby.  Emptiness crushed my chest.  The nurse happened in the room and asked about my tears, she placed the phone in my bed and dialed the NICU number for me.  I think.

Within 25 days, our daughter, our Lillian went through more in her life than most people face in a lifetime.

She had to be on a ventilator just to continue to live for the first two months of her life.  Pulmonary hypertension was making her very sick.  Multiple defects kept emerging in major organs, aside from breathing being a major issue.

On Dec 5th, we were given a "plan of action"  the team had made their findings and were giving us the sit down.  Trach, heart surgery, chromosome anomalies, mental retardation, death.

On December 8th,  a tracheostomy was performed.  10 days later, her ribs were spread to remove a portion of her aorta and to close a whole in her heart.

My life stopped.  Everything I knew as a parent went out the window.  All I can tell you, is I faced on day at a time.  Crying my eyes out each night, alone,  in prayer.

Welcome.  This is just the beginning.

Suffering

As I had my quiet time today with the Lord, I was reading in Psalms, and I read verses about God hearing and helping his people who call out to them.  I thought of a particular friend that I thought might be encouraged and I shared those scriptures with her.  As my day continued, I happened upon an article about a couple who were struggling with infertility, and I have obviously not struggled with that, however, some of the feelings she wrote about began to work on me.  She talked about how she felt God had left her at times and wasn't there when she was so desperate to conceive.  I began to cry a little, ( her article was very emotional)

It got me to thinking about suffering.  About why people struggle with certain things. I realize suffering is a part of life.  Some suffer more and some suffer less.  This then led me to thinking of my sweet Lillian.  How much I've prayed for healing, yet tried to be content with her having life today.
We were told she would not live this long.  We were the ones who decided we would continue life saving measures for her although we could have made the opposite choice.  I began to wonder if I truly had faith that God would heal her.  I believe that he can. But have my prayers been faithless words?

I don't know.

Then a pain welled out of my chest as I wept and prayed for the suffering of my child.  I've yet to experience a greater pain.   I prayed for her to be covered in protection for the illnesses that will come.  Because they will come.  We've been living them these past nine years.  Oh, how I LONG for my daughter to be healthy.  To speak.  To learn.  To EAT.  TO be HEALTHY above all.  I know, I KNOW there are children that suffer so much more, I know there are people who lose their children.  It breaks my heart.  I've been unable to clear the lump in my throat most of the day.

The pain that I buried unleashed in my physical body today and I'm still aching from it. I didn't realize I had that much pain still buried.  I feel like I'm bleeding today. Literally.  This whole experience is difficult even to put into words.

So, those words that I shared with my friend, those scriptures I quoted her, I keep telling myself.  I'm clinging to them.  Are you hurting too?  I get it.  I do.  So I'll share these words and may the be healing to your pain.

Psalms 34:17-20 NLT
"The Lord hears his people when they call to him for help.  He rescues them from all their troubles The Lord is close to the brokenhearted; He rescues those whose spirits are crushed. The righteous person faces many troubles, but the Lord comes to the rescue each time., For the Lord protects teh bones fo the righteous;not one of them is broken."

Dirty Toilets and grattitude

Sorry it's been so long, you know life just happens and my laptop is busy doing homework and other such things...I'm sure there are so many people waiting with anticipation for my next blog post...anyway. Today a sweet Momma that I met in the NICU posted about her little girl with Spina bifida and how she prayed for poop.  She wondered if anyone prayed for poop as much as she did.  I giggled a little bit, but Lillian struggles with this very same issue.  She deals with constipation, diarrhea, and bloating.  All which majorly affects her feeds and well, everything.  This topic led me to thinking about how frustrated I get because my toilet is dirty ALL. THE. TIME.  in a very weird place because of the constant "pooping" issue.( Because we have to give medication to keep poop flowing and there is just no happy medium with that med. ) I scrub and I scrub but to no avail, toilet is always dirty.  As I sit there, bent over, steam rolling out my ears because I'm cleaning the toilet for the billionth ( spelling, is that even a word?) time, I find myself chided.  My inner voice says HEY! that dirty toilet is a constant sign of answered prayer and then I'm in tears as I'm so so grateful that my daughter was able to achieve potty training.  She was almost 8 years old, but she did it.  And for all that scrubbing...well....I could be changing her dirty diapers.  (although I'm still doing that too, but on my son...tee hee)

That, my friends, is how you find grattitude in a dirty toilet.

Dr Lungs Checks in

Hello Friends!  Today Lillian had an IOS test at the hospital and then we went over to the dr and had her appointment and got the results.  This test is some sort of pulmonary function test that is done on kids who are typically much younger I think.  Anyway, last night I started to get that dreaded feeling of getting a test result that may be bad news.  This morning,  I began to pray for a good report.

She did the test with minimal upset.  There were still tears and anxiety, but once she realized it wasn't terrible she seemed ok.  She didn't perform it totally correctly, but you get what you get.

Since there were NO places in walking distance to go eat so we ate in this tiny little cafe in the medical office building while we burned time for her appointment. ( I didn't want to leave the garage because the hospital validated my parking.

His first words were "it's not as bad as I thought it would be considering what we've been through, I thought it would be a lot worse" (I found it a tad funny that he said we) One test was mildly out of range and the other was way below out of range.  He said the below one was likely due to the way she performed during the test which was supposed to be normal breathing, but she just couldn't understand that concept.  He said the tests were indicative of her diagnoses, lung disease, asthma...etc...her tests were improved after administration of albuterol.  (a breathing treament) He said this test didn't really give them a picture of lung capacity though.

He want us to start her on benadryl a couple times of day to help with her drainage.  Her allergy testing was negative but he believes she still is having reaction to environmental elements.

Then,.well, then...I had to tell him about the sleep apnea spells I've been witnessing and his countenance changed immensely.  He went from relaxed, happy face, to stern, solemn, serious face.  So I am supposed to start a journal of episodes that I witness.  He said we may need to do another sleep study soon.  I told him I was afraid of finding out where all that might lead.  Scary.

We go back in January.  Now we just need to stay healthy.

On another note, if you visit her blog here from your phone (and that's the only way you've ever looked at) just want you to know if you view the web version I have other content on the blog that I've written.

Thanks for your prayers!