Wednesday, April 15, 2020

When the days are different.

On Monday, our day started out as usual.  Feeding, vest, treatments, school time.  By the afternoon Lillian was doubled over in abdominal pain.   Crying, hanging on to me, begging me to stop the pain.  I pulled every trick out of my book to help and then I prayed.  This went on for several hours.  We skipped her "lunch" feeding and she sat in painful cries and tears.  By evening, I think she had thrown up or dry heaved several times, I think out of sheer pain.  We talked and decided to give her half of her next feeding.  She never had any huge results of anything by way of a bowel movement or gas and by night she took her whole feeding and slept.  Her sleep seemed a bit more restless, but beyond all that she seems to be fine now.  It was such a stressful few hours.  I think we were all highly concerned. She seems to have had no other issues since.  By night, once I had time to quiet, I became frustrated.  Fear tried to rise up.  It is so so so so hard to care for someone who can't really communicate.  Let me rephrase, it's hard to care for my child who can't communicate.  Thankfully, i guess, I've learned to ride the wave.  I've learned patience in waiting.  While all I really want is the "easy button", one just does not exist.  

In my crazy, I started to think about all the kids who are home for the time making their parents crazy with all the talking and no doubt fussing and all the things and I was jealous but for a moment.  

Multiple issues have arisen in my house over the last couple weeks, not to mention grieving the death of my aunt.  I've felt battered and sad.  I've focused on this verse in particular, "So we don't look at the troubles we can see now, rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever." 2 Cor 4:18 (nlt)   

I can't control the tiny body that my child struggles in, but I know the One who does. I can only do the best I can to protect her and take care of her and that's where I'll rest, for someday, she will be free from what ails her (as will those who have given their heart to Christ).  I can't say I'm totally always at peace with a life that may not include her.  My aunt loved Jesus, she gave her heart to Him.  She was still afraid of dying.  I get it.  My heart understands it.  I will focus on what lasts forever.  

Wednesday, February 19, 2020


So, we have a friend who had a baby very prematurely.  He's done so well and he finally got to come home after a lengthy stay in the NICU.  Their latest updates are letting folks know he can't have visitors and they are posting tons of pictures.  For some reason, his birth and life in the NICU have affected me so deeply.  I would read their updates which were good, but still my heart ached for them.  I would find myself in puddles of tears as I connected with the situation they were now living in with their very fragile newborn. Everyone's story is different, however, if you've been a NICU situation you can connect.  I was beyond thrilled he was thriving and I'm beyond thrilled that he is home.
 I look at his pictures and I see little Lillian, the trach, the fragility.  I remember my fears and at times can't even fathom that 13 years have passed and I'm in puddles.

Lillian still has Christmas and birthday money she's been holding on to.  This girl loves her baby dolls and there can never be enough clothes.  We have found that preemie baby clothes often fit her dolls so last night big sisters Bethany and Madeline took her to Walmart and she bought some clearance baby clothes for her dolls, and then they hit the Mcdonald's drive thru for a coke.  She had SO much fun.  (course crazy town mom asked second sister to go for extra eyes and attention ) For a moment, Lillian lived a "normal".  I mean, I know most 13 year old girls are not out buying baby doll clothes. but for me, she was out there shopping with her sisters and having a girl's night even if it only lasted less than an hour. 

I'm also experiencing a "normal" sibling rivalry.  All the big sisters have adored Lillian.  Never competed with her...just pure love, adoration, and protection.  Having had a a younger sibling now, and now that he's older it's quite funny to see him react with a little jealousy and give her some sass.  He told her this morning "she is nevva going to go with me when I go somewheya with  my sistas"   Little bits of normal have slid in and oddly comforted my aching heart. 

The last week has been stressful and filled with some PTSD.  Seriously, tough on me this week.  I know God is in control and I'm praying and seeking his will for what steps to take next.  I *think* we are going to resume speech therapy for swallowing and go from there. At the point, for me, I'm not willing to risk any type of surgery.  There are no guarantees and even a 50/50 chance is not good enough for me and honestly, they can't give me a guarantee of anything.

Today, I'm thankful for a pictures of a healthy, healing,  growing baby boy, for the snipits of somewhat "normal" events, and the love that comes from a phone call checking in on me.

Thursday, February 13, 2020

Drs, drs, and more drs.

Yesterday, Lillian saw her pediatrician for her 13 year well child appointment.  I really had no concerns, yet I left and cried most of the way home.  Basically, we discussed lots of STUFF.  Feedings, puberty, rashes...STUFF. ** shout out for a 6% BMI**    Basically, what got my tears a rolling was a "let's talk to ENT and see if there's anything that can be done in her mouth to help her swallow".  Maybe nothing can be done, but maybe something can.  Well, the history of her life started rolling in and all those mouth surgeries and the difficulties of them flooded me.  Even though I knew this was just a "let's see", the past overwhelmed me. Add to that the gentle yet glaring reminders of her developmental delay in ALL ways, and the way she's choosing to cope when she's hurt or sick....TOO MUCH for my Mom heart and mind.  I am trying to make this brief here...give you the highlight reel (terrible attempt at humor much?) and is that high light, highlight, or highlite??? I digress...By about 4:15 I was getting a call for an appointment for today for an ENT and she already had her appointment scheduled for her pulmonologist down there this afternoon. They want me to come at 830 am, I eventually tell them I cannot do that. so they put us in for an appointment at 1130 nearby Dr. Lungs.  I was totally dreading the whole entire thing.  So, after arriving early and waiting nearly an hour and a half past our appointed time, we were taken to a room.  Let me set the mood, it's almost one oclock, I've had nothing to eat, so I'm hangry, and I'm about to be late for her next appointment in an unfamiliar area, AND I already have stress mounting up.  THEN, they come in asking what her difficulty breathing issue is...UM HELLO, that is not why we're here.  They ask again, and then I express to them that I'm not sure why the insisted we be there today when they clearly don't have time for us.  I really have no idea where the miscommunication came from, certainly not me and I'm not even sure the ENT had a clue what I was talking about.  Her "assessment" was that her mouth looked like it should for all the work that's been done in there and we could ask her plastic surgeon to see if he thought a scar retraction surgery would be beneficial...  and then somehow she rolled into her needing a sleep study and a speech eval from the ST that works with them OH and do we want a hearing test and gosh those tubes maybe should come out that have been in her ears for 12 YEARS.....and all mind you in a rush rush rush bc she knew we had another appointment right around the corner. She (DR ENT) did perform a scope while we were there, which I wasn't anticipating and couldn't prepare Lillian for....basically, I'm supposed to get back with her when and with what I want to do to proceed...and NONE of these things could turn out to help and could actually make things worse, the scar retraction surgery for speech and swallowig.  

So, head over to DR Lungs, of course I have to write down her new tests and we've now had  a head CT and a scope up the nose.  ( which by the way the scope showed everything wide open, whatever that means)  I finally start to cry, but reined it in.  (I had ugly breakdown at church with some friends before I left last night and they all prayed with me)  He didn't feel a sleep study would be beneficial or necessary....and I'm over here like how did this whole day turn into a breathing issue?  I guess the only real outcome of this day is that we are going back to her gentamycin year round because she's had a rough winter with having sinus problems which then lead to asthma problems.  She's also suffering from some perioral dermatitis and DR PEDS ordered a cream for that

Her eye is STILL bruised.  Her glasses were reordered and came quickly.

I'm tired.  It's been an emotional and exhausting two days.  Thanks for reading this book if you're still hanging in there.