Difficult days

Well, with near miss of the PICU, Lillian survived another round of pneumonia.  It is so difficult to watch her suffer.  As soon as I enter the room, my eyes are on monitor watch and I don't know about other moms, but for some reason I just can't peel my eyes off that monitor.  Heart rate, breaths per minute, pulse ox....and when you are sitting in the room alone with a child that is nonverbal and quite honestly, too sick to care to interact, you are fixed on the monitor.

On top of hospitals being uncomfortable for your child, it is also uncomfortable for parents.  It's isolating and depressing, escpecially when she is getting worse instead of better. Not to mention I'm already sleep deprived and going on x amount of days of worry. I kept telling myself that I knew, I knew there were multitudes of people praying for my sweet girl...I prayed.  You know what I wished?  I wish  I could take even an ounce of my strength and pour it into her.

I'm so thankful my Mom was able to come a couple afternoons and sit with me and Matt came down a couple hours with the help of some friends.  And if ever again someone offers to come sit with me and pray, I will NEVER turn it down.  It is so hard to be alone in the hospital, maybe some people prefer it that way, but I'm telling you, I could have used some prayer intersessors with me.  In body, not just in spirit.

So we came home after our six days and I knew it was probably wise to talk with the girls about how they were feeling.  We had just finished dinner and I went around the table and asked them each what they worried about when Lillian got sick. One of the girls wouldn't even speak.  One of them said what they were all thinking...they are afraid she will die.  One girl said she worried about money and my stress.  I sat here struggling with tears in my eyes trying to speak over the lump in my throat.  I told them I knew without a shadow of a doubt we would never go hungry or be homeless.  All I could say about the death part, is that it would be so difficult to walk through.  I encouraged them to talk with us when they need to and if they didn't feel they could talk to one of us to talk to someone else.  I told them, that in truth, each of us are the only ones that know what our life is and what our walk is like with Lillian.  I told them that we loved them and each of them is just as important as the next one and we needed to make sure everyone got through these times relying on each other.

There are no easy paths on this walk, but this IS our path.

We had a week with Lillian trying to rebuild her stamina and then this past Monday Ezekiel woke up with croup.  We are praying she does not succumb to anything as a result of this or anything she may have encountered while in the hospital.

Dr Lungs checks in

Yesterday I just started dreading our trip to Louisville today.  I knew there was lots of road construction...I didn't want to make the drive and honestly I was dreading what he might say.  Well...as it turned out, God gave us merciful travel...we didn't have ANY delays or waits on the road.  I mean I was thanking God all the way home for giving us such easy travel.  We left two and half hours early just to make sure we made it on time.  We made a quick stop for lunch and got to the office without incident.

When we finally got called back to a room, the first thing they check is her O2 sats.  She as only satting 93/94..friends...that is NOT a good number.  She always sats 98-100.  I know you're thinking that's not a big difference, but in our world it is.  That being said, she has been sick for about a month now.  and her asthma has been flared to the point of retractions and that is also NOT good.

The doctor said her lungs sounded good, and he said her sinuses were badly swollen.  So her ordered her a systemic antibiotic to hopefully get her over her sinus/ear/ upper airway infection.

They tried to get her to do a PFT.  To do a PFT you have to be able to blow.  Lillian can barely blow bubbles...so that test was out.  So, he ordered another test called an IOS that is done on 3-7 year olds and it will be done at Kosair prior to her next appointment to check her pulmonary function.

We have noticed a marked difference in her level of activity so that gives us a bit of cause for concern.  At this point he didn't think we needed to do a CT but it's likely coming as she hasn't had one since 2012.  But hey, HOLLA...she hasn't had a CT since 2012!!  WHOOP WHOOP!

So the day I dreaded so badly turned out very nicely and I'm so thankful  It still makes for an awful long day and is for whatever reason extra exhausting...it doesn't help that Ezekiel cried and whined all the way home instead of napping which he did shortly after getting home.

On another note, I finally started her on the probiotic our kidney dr wanted her on and she's been taking it less than a month.  She weighed two pounds less than when I had her at teh dr in January.  Her stomach has also looked far less bloated and much more normal...something I was starting to grow very concerned about.  (the bloated part..lol) So good news all around today, minus the fact that she's still struggling with sick/asthma junk.

Scars

I see the marks left behind
Reminders of pain, physical for you
Emotional for me, harsh reminders  of 
the past...

It used to grieve me when I would see all those small puncture wounds in your groin.  It reminded of the marks a sewing maching leaves behind in material.  How did you endure so much?  I'm sure I'll never understand it.  I can't really comprehend it.

You struggled to breathe yesterday as we moved briskly though the cold and it struck me again how i'd forgotten you sometimes can't breathe. A little bit of panic running through my head.  Asthma attacks scare me a bit.  Even with today's modern medicine, children still die from asthma attacks. 

I, once again, had fallen victim to feeling so normal.  We had your hair cut and I wondered what the gal must have been thinking..maybe she wondered why you didn't speak in words and only in grunts. But I was silent.  I just stood there holding your head when necessary.  I took some pictures after wards and you were so tickled. You had the sweetest smile on your face and I noticed in the picture the scar on your neck.  The forever reminder .I shudder at the recollections of those times.

I see the scars left behind
gentle reminders of hopeful days ahead.  

In my dreams

In my dreams, I want a room full of all the things you love...a play set, a full toy kitchen, a little pretend grocery store.  Room for you to run and play.  No limitations in this room.  There are so many ways you are limited in your surroundings. Not even sure about places that are safe or even fun to take you.  I know we have much to be grateful for and I AM...I am so grateful.  There are days, though, days that I ache for what I cannot do...what I cannot give you.  Days when I feel like my best is just never enough.  You don't seem to know, though...which is a blessing..but also brings a bit of pain to my heart.  Love, though, you will never lack for love.  How I long for your life to be easier.  For you to be healthy and healed.

My sleeping dreams are another story...they are filled with sadness and pain.  They are cruel tricks of my subconsience.  They are riddled with pictures of you dying...why do I dream this way??  I long to close my eyes and never again wake to wetness on my cheeks as the tears spill into my waking world.    It is a dream I fear will someday become reality.  Something I will NEVER be prepared for. 

I will try to stay in today.  Not think about my dreams, waking or sleeping.   

Balance

Remember those years as a child when you tried to stand in the middle of a teeter totter to keep it balanced and not fall off?

I was trying to remember a time when I felt really carefree...I think it was when my Grandma took me and my sister to the park.  She's is older than me and when I would push her on the swings (the seats made out of wood) I could grab a hold of that seat when she was coming back to me and it would lift me in the air.  I loved that feeling of being weightless.  As long as she wanted to be pushed I could be lifted into the air and feel that way over and over. I preferred that to being pushed on a swing myself.  How ironic it is to me that such a memory brings on a wave of tears. We were little kids then, but even as a child I worried.  My mom dealt with a lot of serious illness that nearly took her life and our home life was a little unstable, to say the least.

Just when I think I'm staying pretty balanced something else comes along and  life gets harder to balance.

It's difficult when your life revolves around keeping your child healthy...and I know every mother does that...but when you have a medically fragile child it all goes to a whole new level..The things you have to do to maintain your child's health.  Every decision you make has to be based on the affect it will have on that little life you've been entrusted with.

Add past mistakes that disable you from even being able to provide a good solid home for said child.

Add to that your concern about what you do choose being judged by everyone you know and don't know for that matter.

Then, you have another child dealing with an illness, and there you are helpless as ever.  Not able to do ANYTHING to help, except to pray.

Prayer moves mountains...prayer changes things.  But, sometimes, it's difficult to wait on those prayers.

It all weighs on you, rather, it all weighs on me.

Transparency...here it is...for the first time in my life as far as I can remember, I don't have the desire to attend church.  I am struggling with being preached to about love and reaching out and helping others and relationship when I have felt abandoned. I learned a long time ago that people with fail me as I have failed others I'm sure.  I try really really hard to reach out to others.    I pray and I worship. I'm tryiing to live in grace, but noone is perfect and it's hard.  Ugh.

Writing became a way for me to heal when Lillian was born, though I didn't know it at the time.  I have started several blog posts and just have been too tied up to write anything that made sense.  This whole blog post itself may be crazy, I don't know.

Balance.  The balance is off and I'm struggling.

Dr Heart and a family update

Lillian had her routine cardiology appointment today.  We didn't have to drive all the way to KY this time as they have an office in New Albany.  Woo hoo...it was a somewhat easier drive and hey NO construction...can I get an amen?  It's been two years since she's been. The first question they asked was if she had her heart CT.  I was like, no...what heart CT?  Apparently, his office dropped the ball and didn't schedule one and neither Matt nor I recall him telling us she needed one.  However, he "wrote it in his notes so he knew he had told us" .  Anyway, he got a really good look at her coarc repair this time and was happy with what he saw.  I did ask him what we needed to watch for and basically they things can happen are not evident to us..they can only be assessed through testing.  He told me that pediatric cardiology is relatively young, about 50 years.  And over the last 10 years they are just now starting to see the effects of certain procedures.  Does that make sense?  So basically, she is at risk for aneurysms and dilation of the aorta. Since he got such a good look today, he is not adamant about getting a CT but if/when she has another one he'd just add on the heart part just for good measure.  Overall, a good appointment, but I told Matt when we got home that sometimes I feel like she's a little time bomb ticking away.  It's easy to look at her and sometimes see past all of the issues she has to deal with.

In other news, our third daughter was hospitalized for two weeks in November and those weeks happened to overlap with several of Lillian's specialist appointments.  Isabelle did come home with a feeding tube in her nose after having been diagnosed with a colonic ileus and severe lower quadrant pain.  Most folks involved in our lives were aware of what was going on.  What most don't is that since she's been home, it has been a slippery slope down hill.  She has continued to have problems with eating and tube feedings to the point that she passed out in the shower a week ago yesterday.  On Monday she was scheduled at an eating disorder clinic up North.  At that appointment it was clear she was in danger from a medical standpoint and after a brief conversation that resulted in her shutting down and not speaking to me, we made the difficult choice to have her admitted to Methodist Hospital adolescent psychiatry ward.  One of the hardest days of my life leaving her there crying with her head down. It has been indescribably difficult to have her gone during this time.  I stayed in Indy the entire evening after leaving her and my brain telling me to go back and get her.  This has been a very difficult season and continues to be so.  She is still there and we are hopeful she will be released tomorrow.  While I wanted to ask for prayer globally and I have no shame in what we chose to do ...it is very complicated to explain.  So, I ask for prayer now.  Pray she will be totally healed and continues to recover.

We have made trips to see her every other day and I'm so grateful gas has been so low because it takes a fill up every other day to make the trips.  Matt had to be off work for her previous hospitalization and we are still in the recovery phase of that financially.  Those bills are just starting to roll in. We are grateful to have very good insurance, but will still have a substantial amount out of pocket.  We know God will continue to provide.

I leave you with a picture of Lillian I took to show her how "crazy" she looked to try to help her calm down for the EKG.

Hair cut

Today Lillian got her second ever hair cut in a salon.  The stylist is a friend of ours and graciously opened her shop this evening so Lillian could have her hair cut alone.  There were tears at first.  Fear is her first response to most every thing these days.  As she began to realize that this was kind of fun to sit high in a chair, she calmed down and big alligator tears rested on her cheeks as smiles soon replaced fear.

as I sit contemplating the night, I wish the fears I harbor could be as easy as taking the scissors and trimming them away and dumping them into the trash.  In about a month and a half this little angel will turn 8 years old.  8???  How can it be?  Her 8 years of life sometimes seem like its been an eternity.  Struggling through so much.

As our children are growing by leaps and bounds I'm starting to really realize that it will be just a short time before they are all off living their own lives.   We will still have a great deal of time with Ezekiel and Lillian..which leads me to thinking on the future.  Now, I don't feel like I focus on negative thoughts, but I can't help but sometimes wonder how much time we will be granted with our sweet girl.  And I'm just going to say it.  I don't want to be in that club.  I don't even want to call it out.  But at times I'm afraid.  And that fear is overwhelming.  It weighs on my heart.  Heavily some days.

So today, I'll swallow my tears, focus on this....and pray for peace.