"talking"

Lillian's breathing at night does seem to be improving.  She is just having some light snoring mostly related to what position she's in. 

She is singing A LOT and making ALL kinds of new vocalizations.  It is like having a baby in the house.  Very much like the babbling noises a baby makes when learning to talk.  We get a lot of short, fast phrases that make sense too, but we really have to be paying attention.  She is still sleeping quite a bit too.  I think she goes back to her bed tonight, as I feel like I no longer need to be at an arms reach.  We were able to advance her feedings to normal as of today, so I hope that continues.  She will follow up soon with Dr Plastics and she's supposed to have her very first dentist appointment Monday.  I think the dental appointment, having been made so long ago, will likely be rescheduled.  Not sure I want a dentist poking around her mouth at this very moment in time.  I also think we may have to do some more training to get past the recent trauma of the surgery.  Not to keen on wanting someone in her mouth, can't say as I blame her. 

Thank you for continued prayer.  I know that is what continues to get us through! 

Not AS bad

Lillian's nighttime breathing seems to be getting better, she kind of fluctuates from really hard, sucking breaths, to normal sort of snoring.   I feel like I'm awake every hour because she is so restless or needs readjusted if for no other reason than to just induce a cough to clear some drainage.  It is my prayer that the inflammation is still there but improving each day.  (I just rearranged her and she sounds awful....crikey) She tires easily and we find her just sitting quietly from time to time.  She SO enjoyed opening gifts this year.  She hears the word present and she gets super excited.  She raises her hand and waves and vocalizes me me me.  When we went to Grandma's she even asked her Daddy to open his presents and he let her of course.  She loved doing it even knowing it wasn't going to be something for her.  I think her favorite gift may have been the "hair styling" accessories and her new mini chuck trucks.  Friends, she LOVES those little chuck trucks.  That being said, she has greatly enjoyed blow-drying our hair, her hair, her bald babies' hair....and anyone who will let her "dry" their hair.
 A friend of ours from church gave us some clothes for her and this vest she's wearing was in it along with lots of other adorable items and she just LOVES the vests.  Cracks me up.

I still feel like I'm trying to get back to a normal functioning schedule...HA..now is that a funny sentence or what?  Going to try to enjoy these days off with the kids home from school and treasure our moments together. 

Five Years Ago

I left you laying in the NICU so I could be home to celebrate Christmas with your sisters.  I left you there, healing...and today I sit beside you as you sleep, praying for more healing. I know it is impossible to go back and even more impossible to undo decisions we've made.  All I can do, is hope that we made wise, informed ones that are for your very best.  It's hard to see you struggle to breathe, as that is how you came into this world... My hope, every day, is that you will not recall these difficult times and you'll only be filled with memories of the love everyone has for you.   Merry Christmas precious girl, Mommy loves you so much.

Home

It was a yuck drive home in nasty rain, but it was so worth it.  The doctor showed up in Lillian's room last night around 6pm.  He said we could stay or go home, and I said we are out of here.  I honestly can't believe some of the crap that happens when we end up in the hospital. 

Everyone went to bed last night and I felt so weepy,   I told Matt that I knew I should just let it go, but its so hard to know what your child needs and have to try to convince the medical people that I am right.  Makes me feel like I cannot care for her properly. 

I'm not sure I will consent to or hope for anymore surgery for any good long while to come. No matter how necessary we think it might be.    I pray she remains healthy and out of the hospital.  I honestly start to wonder if I can really keep sane, seriously.  This is the hardest situation I've walked through in my life.  It is the WORST feeling to be so helpless.  The only comfort is resting in the Lord and remember He has it all even though I don't understand it. 

To you ALL, family, friends and prayer warriors I don't even know, I can't even express my gratitude for you prayers, your thoughts and your supportive comments.  The angels who arrive at the door with a meal for my family...friends who will help out with the kids so Matt can go to work..you just can't imagine how much it means.  Thank you so much.

Lillian had a rough patch through the night, but slept and was better once some pain medicine kicked in.   Her breathing sounds terrible while she sleeps, but it seemed less labored later in the morning.  I hope that means the inflammation is going down.She is playing around the house and I'm being a big old bump on a log.  Think I'll take nap maybe.  My mind  wants to make cookies but my body is still trying to recoup from 48 hours of mostly awake time.  It's amazing what your body can do. 

We are already hearing lots of new vocalizations from Lillian and gives me great hope for her communication abilities, I can't hardly wait for her to start back to therapy.  I've also noticed she's been able to take drinks without getting choked at all.  Amazing.  Now, if I could just make the kids understand it wasn't like magic and she will still need to learn how to use the new mechanism in her mouth.  :)

Day 3

Lillian is continuing to have problems with secretions, fever, and vomiting.  If we could control her fever, I think she would be so much more comfortable, but keeping it in her gut is an issue.  So we called the surgeon to see if he would order a suppository and instead he wants her to be seen by a medicine dr.  SO- I am waiting for that doctor to show up.  Apparently he is tired of managing her care.  I am exhausted and getting fed up.  She is laying here miserable. Part of me just wants to get the discharge papers and head home.  Totally fed up.

Pharyngeal Flap 24hours later-

Notice she has her little leg crossed...

Lillian has been sleeping for a couple hours, since her three oclock feeding and dose of T3.  Interestingly enough, she seems to be mumbling and gesturing in her sleep a bit.  Her stats are hanging in the mid-high 80's low 90's, especially while she's sleeping. 
Todays points of interest:

1. No puking as of 10am.
2.  Still having fevers
3. Still needs O2
4.  Her eyes look a bit more normal now. 
5.  She has smiled on request twice
6. My chair broke as I sat down to read to her and I twisted my back, took the fall on my elbow, and lost my dignity for the rest of the day.
7.  Former patient families stopped by with very generous gift bag and slice of some tasty pizza (she has yet to waken to see gift)
8.  Hoofed it over to Norton Cafeteria, as there is only a Mcdonalds in Kosair....Guess what?  They have fountain MT DEW!!!  WAHOOOO...
9.  Got a 45 minute nap at 3....double wahooo!
10.  Realizing my positive "we are coming home next day" attitude, should have packed a hair dryer and bathroom needs beyond my toothbrush. 

I am really  hoping she perks up tomorrow or even tonight.  She cries when I move her. 

Bethany is attending her first winter formal tonight and Matt has arranged for the girls to stay with someone tonight so he can go to work tomorrow.  Isabelle is balking not to go.  Nothing like having your heart torn between two places.

My view

Her facial swelling is down some.  So far, she got a dose of T3 at 10.  Hoping that will stay down and give her some relief.  Her breathing sounds terrible, although it's not her lungs, it just the drainage and change in what they've done to her palate.  Her night was brutal.  I think I slept maybe 3 broken hours?  I don't know.  At 430 I hit the wall.  I kept thinking what a nice night we had before all this.  She just didn't look normal in the eyes AT ALL until just a little while ago. I found myself not knowing what the best thing to do would be.  Her nurse last night was great.  She got Lillian as her patient at 11.  I told her I bet she was glad to have gotten sick patient and unstable parent duo.  She just patted me on the back and tried to give me some comfort.   She spent most of the early night hours dropping sats down into the 70's.  They tried blow/by oxygen and that didn't help so they put her on nasal cannula about 2.  Her cough is so yucky.  This has been the culprit of the nighttime vomit volcanoes.  Today, notsomuch.  She is just puking because there is so much blood in her gut.  The Dr said the surgery itself went well..as planned but he knew her enough to remember it would not be an easy recovery, which unfortunately is proving to be true.  She took a couple sips of sprite after the last pukefest and has been in and out of a doped up sleep.  She is breaking into sweat cyclically, routinely drenching her hair and pillow.  I can't remember the last time I was so troubled by the sound of her labored breathing.  At least we KNOW it's not a lung issue. 

On the upside, the pleather cave window bed is not terribly cold as long as I get the blanket all around me.  Although, I almost kilt myself jumping up to get to her when my feet got tangled in said blanket. 

Out of surgery

Well, friends, she's out and it's not pretty.  She is miserable looking and acting.  Her face is swollen greatly and she is vomiting lots of bloody mucous.  They just gave her some zofran iv.  She is needing to sleep, but keeps fighting to stay awake. 

TRUST--&--PEACE

I was a speaker for a church Christmas ornament exchange a couple weeks ago.  I was able to share a little of my testimony of faith as it has unfolded over the last several years, altered greatly by Lillian's birth.    After I spoke, I really examined my heart and realized I was was probably wussing out a little when it comes to situations where I feel so out of control.  I DO believe God is in control and He's got it all.  I'm trying to learn how to NOT be anxious or fearful when it comes to surgery and everything else that pertains to Lillian's health.

Her pump sounded the end of her feeding and it triggered the thought in my mind, "YAY a whole feeding in with no problems" quickly followed by..."wow, it will take another month, after tomorrow, to get back to this point...again"

I have not allowed myself to build up anxiety, I've really tried not to focus on tomorrow's events at all.  I'm trying not to have expectations about what it may or may not do for her future. 

I've been feeling a bit jittery, edgy even. 

So, if you would, say a prayer, for her, for my family, for me.  Will update as I can post op. 

Nostalgia

WOW!!  What a day....let me back up by saying I have gotten very poor sleep the last two nights, I could go into detail, but suffice to say I've not slept well.  I had a lunch date with a long time friend today and my Mom graciously kept 4 of the 5 girls (oldest at a friends) so that I could have lunch with my friend.  We sat and caught up for roughly 2 1/2 hours.  It was wonderful.  We get to see each other so rarely and it was great just to catch up.  I knew she had a Christmas surprise for me, but was overwhelmed to discover her church/church's daycare had put our family on their Christmas tree and she filled up the back of my van with gifts.  There really are no words to describe how blessed we are to receive such a generous gift.  It is the true feeling of humility and grace.  NOW, my girls will have more than three packages under the tree this year.(  I know Christmas is not about gifts...and they know that...but it is still difficult to not be able to give them as much as I would like to.  )  We have been very blessed to be on the receiving end of being supported for Christmas ever since Lillian entered our lives and there are really no words to describe the grattitude I have.  So, we had a nice lunch and a fun surprise, a few tears and I headed back to get my kids.  I enter my Mom's house, to find Lillian sprawled out on a blanket in front of the tv.  I almost wept.  Before my parent's divorced, anytime the kids stayed with them we would always find them laid out like that.  Just the familiarity of the scene tugged my heart strings.  Added bonus, to see Lillian in that way was extra cool.  After leaving Mom's, we headed to my SIL's house because she had a little Christmas gift for the girls and our family.  We got there and each girl got a small popcorn box full of microwave popcorn, a box of candy, a night shirt, and hot chocolate packages.  She then presented me with a big bowl of popcorn packs, cocoa, jars and dishes of Matt's all time favorite homemade goodies she makes..a huge pumpkin roll, old fashioned potato candy, fudge, apple butter, AND a DVD collection of old Christmas movies and cartoons.  Today felt like I'd been jolted back in time to when things were not quite so complicated...you know what I mean?    I am physically tired today, but emotionally filled with so much love and comfort.  Great great day. Just seeing all those people in one days time would have been enough!

Lillian's surgery is scheduled for 2:00, Tuesday afternoon.  We'll be there at 12:30.  Thank you for continued prayer!

Queen Lillian

 I am whooped or wrapped or whatever you want to call it.  Almost everyday, I bring down this back rest pillow for Lillian at her request. Today she requested her blanket too.  Sheesh.  I get her all set up on the couch.  Go sit in the dining room.  Five seconds later....

Her highness "requests" moving over to the loveseat.  To lessen the chances of a pulled out gtube, I go and mover her to her other couch throne.  I am a sucker. I think. Look at that grin. All in a day as the Queen's subject.

INsource

Last night I attended our local Special Needs Support Group.  This is only the second time I've been and there was a rep from INsource there discussing our rights in the education process for our special needs children.  Most of what she talked about just further confused me. 

Here's my initial thought process....I have this child of mine, who happens to have all these special needs.  I guess, I expect to learn as I go because I've never been in this situation before.  I know what I've been told by the people who have been working in this situation for way longer than I've been a participant in it.  Know what I mean? 

I guess the short version of last night is...we have rights.  INsource is a resource to help us make sure we are not getting steamrolled.  I did find out a few interesting tidbits, which tells me I NEED to read a huge document known as Article 7 and get to know it well. 

Other really interesting tidbit...Lillian is now being taught to communicate with ASL.  When we started working on communication in therapy, it was decided that Lillian would probably speak, so we should just try using signed English.  We bought a book and on we trod.  Well, here we are 4 years later, her ST doesn't think an Ipad is a good choice right now and they are teaching her ASL.  Guess what?  We don't know ASL.  HELLO.  WELL, according to INsource...the law states that our public school..ie the state is responsible for training us.  So, if they are using ASL as a means of teaching her to communicate...then they have to also provide training for us.  I just have to make a request in writing to the powers that be.  AND, if they deny our request then INsource will step in and advocate for us because all these issues are laws...people...laws. 

Now, back to my beginning point...I had NO idea this was possible.  I've often wondered about issues such as these, but didn't really know where to turn. 

I also made a new Warrior Mama friend. That was a nice bonus too. 

We like shoes, you like shoes?

 Are these things cute or what?

 Look at his little happy face!

Modeling her shoes!!  Almost too ashamed to post this picture bc of the mess in the background.  I guess if you didn't notice it before I've pointed it out now.HA!  I had to take this pic five times to get her to stand still.  LOL
She brought all these home today from school with a letter saying a local business donated them.  Can't imagine how many they had since  Lillian got three pair.  Pretty cool! Course, it probably helps that she has teeny tiny feet.  :)  What a nice blessing for us!!

Goofy Goober YEAH!!

If you read this, then you will totally understand these pics.  If you didn't read this, it won't matter too much, just give you understanding...enjoy!

Laughing even...what a nut!

Dr Lungs update

 Poor little girl don't have no toys....

 She has to play with her formula boxes...

Even makes a sidewalk...pretty cute with her baby, right? She's a queen on her throne! Ha!

I took these pictures over the summer and thought I'd lost them, but turns out they were just not saved to my SD card. Hello.
Dr Lungs wants us to do percussion twice a day.  Not only twice a day for fifteen minutes but with her lying down head on a decline.  Should be interesting. No?  He put her on Bactrim once a month for prophylaxis during the winter months.  We are also going to take a course of levoquin starting tomorrow because my pharmacy doesn't have a drive in and it is N-A-S-T-Y outside today.  Raining, cold, and WINDY.  The drive down there and back was intense.  Just trying to keep my vehicle on the road from the gusts and not hydroplaning was a trip.  Had a big old headache by the time we got there.  Thank the Lord for keeping us safe.  There was quite a wreck on the south bound side when I was northbound.  UGH.  God bless my neighbor who got Madeline off the bus, let me park in her driveway because mine is flooded ankle deep all the way across, and also gave me two cans of kidney beans for dinner so I didn't have to go schlep back out in the nasty weather.

Tried to take a bath a bit ago and nothing will bring you out of a tub quicker than the sound of a sickening thud thud thud and oldest child screaming out "OH NO OH NO"  10 years off my life...seriously.  Lillian took a tumble down the basement stairs where Bethany saved her from hitting the concrete...but 6 steps tumbling nonetheless.  What a day.

Irony

It's a funny thing.  When I was pregnant with Lillian, before I was put on bedrest, I babysat in my home.  The people's kids I watched gave us a playpen, high chair, and johnny jumper.  How funny is it that five plus years later Lillian is playing in the playpen. ( The oldest usually keeps it down in her room for her dolls. ) We had some family in last night and we set up the playpen in the living room because they have a baby we thought might need it.  Today, all I have done is watch Lillian pile items into the playpen, then point to me and then into the playpen, indicating that I'm supposed to put her in.  Same thing when  she wants out, first she throws everything out and then motions for me to put her in. Was never able to put her in a playpen as an infant and now she's in hog heaven playing in it.  Hilarious.

Friday we had a follow up with ENT.  She thought she looked great...although her entire face was swollen that day.  Today we have a follow up appointmet with Dr Lungs.  I dreamt all night last night that I was lost and couldn't find my way to the office and I kept walking around in circles in a hospital and noone could tell me the right place to go.  Needless to say, I didn't sleep well at all last night and Lillian woke up at 5:27 when her pump starting beeping and I didn't hear it right away.  I dread that drive down there today, I'm tired and its perfect sleeping weather here in IN.  Raining and overcast.  Lillian will likely sleep and then be up super late tonight.   Oh well.  Hopefully we will have a safe drive and the back ups will not be so bad.  They have a major bridge crossing closed down that way, so I usually sit in 20 minutes of back up.