Sunday, September 25, 2011

I know I must sound like a broken record

but I HATE puke.  I HATE that every time we have hooked Lillian up for a feeding for the last week maybe two...that she is gagging and puking with it.  Today, at her last feeding, it was more than just  a little puke, it was a volcano.  Projectile.  While we were in Noble Romans for my nephew's bday.  I drove home conversating with the Lord about why she has to puke.  Her whole life has been like this.  It can be SOOOOO discouraging.  Even from the time she was born she has struggled with this.   I hate that she cannot even really eat anything to make up the calories.  She does not have a nissen.  I don't really believe it is GERD.  She was on medications for over two years and they didn't make a difference.  Ususally, throwing up is her "tell".  Her tell that she is sick in some way.  Her ears are not oozing, she's not really coughing anymore, BUT, the vomit rages on.  People keep asking me how she's doing....PTL she's not in the hospital, suffering with some respiratory junk....she's not at her normal right now.  It is downright painful to see her suffer in this way.  She must be hungry.  I want to cry, but I'm not letting it out.  Remember, when I posted there are things?  This puke cycle is right up there with things I don't get. 

I've never been the kind of person who cared what other people thought of her when we were out somewhere.  But recently, there is a voice in my head that says..."hey, these people aren't used to seeing a child puke like this routinely"  and I don't want people that do know us that I've got her out exposing everyone to some stomach virus. 

Feeding intolerance.  That's what they called it in our genetics counseling sessions.  I guess I thought she'd outgrow it.  Here we are though, almost five years in, and she is still struggling with some of the same issues. 

Don't misunderstand, I am utterly grateful for the battles she's won....its just hard for a Momma to see her babies hurting.

Thursday, September 22, 2011

Getting some glasses

Here's a little preview of what my baby will be sporting pretty soon~~

Wednesday, September 21, 2011

How much can a tiny body take?

I'm just going to forewarn you that I may sound a little like a raving lunatic...

Today, I attended the viewing of the baby I mentioned Monday who had passed away.  I waited in line for an hour.  The place was packed.  I neared the guest book, and started to lose my resolve.  Tears pooled in the corner of my eyes, I've never been to a baby's funeral before.  I stood there, inching closer to the family, and his Mom was so distraught.  It was heartbreaking.  They kept stroking him in the casket.  He looked so sweet and peaceful, like he was sleeping.  Mom had stepped away from the casket when I got up there, but her Mom, his Grandma was there and I held her in a tight hug as she thanked me for coming up....*shakes head* The grandparents all appeared to be very stoic.  All I can think of is the days ahead for them.  How right now, they are probably still reeling in shock and how hard the next days, weeks, months, and years will be.  I mentioned them for prayer in our Bible study this morning, and like people do...someone mentioned that we had to remember God has a purpose in it.  I do know this, but at that moment, I wasn't really interested in particularly receiving her thoughts in the matter.  While I have NO idea the loss of a child, I've stood very close to it.  I know it sounds selfish, but when I experience what I did today, I think of my own children, which I think all parents do.  What would I do?  How would I handle it?  I think especially of Lillian and while she is SOOO incredibly happy most of the time, she is usually fighting something ALL the time.  I start to wonder how long her body can handle the issues she deals with 98% of the time.  I wonder if anyone else thinks that of their kids?  There are those who will can't think like that...I don't think like that ALL the time, but in times like's hard not to.

Lillian continues to struggle with her feedings and  I think I need to call the Dr tomorrow and touch base just to get his thoughts.  It's been a hard day. 

Tuesday, September 20, 2011

Brutal night

Lillian dozed beside me in the bed until about 11pm.  She began to writhe and whimper in her sleep.  Her facial expressions showed pain, she started reaching out to me.  Crying, she continued to twitch and grunt.  Something I'm not quite sure we've ever endured with her.  It took her about an hour, but she settled down and went back to sleep.  Round about 1am, she woke us screaming...I entered her room to find her face completely flushed and her vomiting.  She puked and puked and puked until her gagging, guttural retching, brought me to throwing up myself.  She jerked and pulled and cried out in pain.  It was really a stressful couple of hours.  I tried to comfort her, asking her if her belly hurt.  The grunting seemed so strange.  I was stuck, right there, not knowing what to do.  Something was wrong, I couldn't fix it, and she could NOT tell me what was happening.  This continued on for about a solid hour.  She finally laid down but continued to moan and grimace in pain.  I picked her up, tucked her into me and rocked as hard as I could on the bed.  I began to cry out to Jesus, in faith, to take away whatever was going on with Lillian, and give me discernment to know if I needed to take her to a hospital.  I must have done this for close to an hour.  She finally fell into a restful sleep and slept until we woke her this morning, our car wouldn't start and we had  to take Daddy to work.  She seems OK today.  I just started her first feeding of the day, so we'll see how it goes.  It's hard to be in this spot of wondering if a medication has caused this or if there is something related to the bronch, or if there is just something else going on in her body.  I'm thankful today for answered prayer.  She is seemingly no longer in pain and I hope whatever it is has indeed passed.  What a night.

Monday, September 19, 2011

There are things

in this life that I will NEVER comprehend.  I spent this day in prayer for a friend who found her five month old baby in his bed this morning, not breathing.  A perfect, healthy boy.  He sits in the arms of Jesus as I type this.  I sat in a prayer meeting this evening wanting to cry out, I don't understand...I wanted to wail in the unfairness, that this young mother, will have to bury her son.  Her one and only son. Her first and only child.  I still find myself constantly wondering why this had to happen.  How can I comfort this family?  I find myself in tears, wishing things were different.  I opened my bible to do my evening bible study, the first section asked me to memorize a passage in Daniel.  The first verse was so impactful...v 20"Let the name of God be blessed forever and ever.  For wisdom and power belong to Him" v 22 'It is He who reveals the profound and hidden things, He knows what is in the darkness and the light dwells with Him." These verses are in Daniel chapter 2 as Daniel seeks God to give the King an interpretation of his dream.  I find some comfort in the words of Daniel.  Tonight, the Pastor read about Mary and Martha weeping for the death of Lazarus, telling Jesus if He had only been there, Lazarus would live, and the bible says, "Jesus wept".  I've wept, A LOT, today.  I weep for the loss of this precious boy.  I weep for the grief that must surely be engulfing my friend this night as she goes to her home.  The home that just the day before held the laughter of her son.  I weep because I want to KNOW.  I want to understand.  I weep and I pray. 

Isaiah 55:8-9 "For My thoughts are not your thoughts, nor are your ways My ways, declares the Lord.  For as the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts"

Romans 8:28 "And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose."

Friday, September 16, 2011

Long Day

Update.....Right after posting this, Lillian spiked a fever. After speaking with Dr Lungs, he said he took a look at some of the preliminary findings and it looks as though something bacterial is growing in the lungs.  We are to give the levoquin 24 hours and see how she does from there...

We arrived to the hospital for Lillian's chest xray and bronch.  We were to be there at 1030am.  Upon completion of the xray, we went to surgery and things moved rather smoothly until the administered the versed.  They gave it to her and then it seemed to take them forever to come get her.  They also insisted she have an albuterol treatment, which I don't like...but pick your battles, right?  Anyway, they took her back and they did biopsies and sent them for several different tests and cultures, some of them will be sent to Yale for study and those particular results won't be back for 4-6 weeks.  He is supposed to call me in the next week with results from some of the cultures.  We sat in the waiting room for quite a while and I started to get that uneasy feel of wondering what was taking so long after the doctor had spoken to us.  We finally got called back and were told that she actually coughed up quite a bit of blood.  Typical is pink tinge secretions, but she had spewed up blood.  They had to call the Dr Lungs back to look at her again, and he said we just need to keep an eye out for anymore.  He took some lovely pictures and even gave me a copy.  He did find some granulation tissue at the stoma site and said we just needed to keep an eye out for breathing issues.  He also pointed out the words I've always dreaded hearing...tracheal malacia.  I always sorta thought in my head we had dodged a bullet, her not having that particular affliction, but apparently some has developed.  He seemed pleased with the results, but it always makes me uneasy when they tell me there is something many bronchs as she's had and no doctor as ever diagnosed that.  Now we wait.  He did order her back on Levaquin due to her recent coughing that has stirred up.  Thank you for prayers.  It has been a long day and she has just now started acting like herself. 

Tuesday, September 13, 2011

An oversight

I've already been struggling with the fact that Lillian will have to go to Kindergarden next year, right, I think I might have mentioned it a time or two.  Maybe not.  Let me back up a moment, I started volunteering in the library at school again this year. Started last week.  I almost had a big old break down just watching one of the little girls in the K class.  She was in Lillian's class last year.  She was doing ok, but just putting my child in her place next year, brought on quite a bit of anxiety.  I stuffed the thoughts in another place in my mind and went on about my duties. 

Today, as the aid helped Lillian to me at the bus stop, she said to me..."she is probably pretty wet, she had a lot of juice today" As soon as I picked her up, the smell of poop assaulted my nostrils.  I said, "ewww, and pooppy too."  I get her in the house, go to change her diaper, and find her diaper almost overflowing of poop.  (I can't think of better terms, so poop it is)  I get it, she could have done that from school to home...maybe....except there are defined reddened areas where poop has been on her skin for longer than a two minute ride home.  Now, my child, her skin is sensitive.  She breaks down quickly.  She's red on her lower back where poop has been pressing into her.  I go back in forth in my mind about what to do.  I'm convinced within myself that this is NOT a "just happened" situation.  I decide to email the teacher.  I was nice.  Factual.  I mean, I really am a reasonable person.  I'm not sure if I feel better after the apology...and the words, this was an oversight.  I read on to learn the last time her diaper was checked was 2 when she was found dry.  She gets off the bus at 330.  You can do the math I'm sure.  Oh, and noone smelled it....ok.  I'm trying here people.  I'm trying to be rational. Right now, I just feel disappointment.  How am I supposed to be comfortable with her, a nonverbal child, being in a place for several hours of the day where at least 3-4 people, who work in CLOSE proximity to my daughter, don't notice something like that...and even tell me she is "likely really wet from all the juice she had at snack" ...but we didn't think to check her again for an hour and a half....seriously?  who likes pooppy diapers???  oh me me, me I do....Come on.  Discouraging.  An oversight.  *sighs*  I did also get the teacher's assurance they would check her from now on....thanks.

Monday, September 12, 2011

*warning* post may be scattered

You've been warned, that's all I'm sayin'.  I woke up late this morning, having set my alarm clock for 8PM rather than 8 AM.  Huh, go figure.  So, I woke up at 9AM, the same time I'm supposed to have Lil at therapy.  :/.  I was feeling very frustrated at a certain person, besides myself, for not having made sure I was up and going....I could NOT comprehend why he would not check to make sure we were going since he knew we have this standing appointment EVERY week.  I rushed around, threw my clothes on, tried to make my hair NOT look like the grease ball it was bc I was not going to get a shower before going into a public place.  Lillian was already awake, playing in her bed which I did not hear, probably because we have two fans running upstairs.  ANYWAY- I get her to therapy half an hour late, and rush home to shower.  My Mom calls me just as I've stepped out of the shower and my very short, frenzied Monday unfurls on the phone.  I found myself, blubbering away...pains in my chest with each swell of tears.  My head is saying, oh Michelle get a grip on yourself, it's not a big deal.  Not a big deal.  I started pouring out to her or at least in my head how difficult it is sometimes.  I don't complain to garner sympathy...I guess I needed to just let it out.  We have been approached by a few different groups through church to be involved in the youth groups.  My problem, I WANT to say yes, I want to jump in and DO it all.  The trouble is, I can't jump in whole heartedly and be dependable.  Here it is...the issue I'm trying to say delicately...I think, I may be upset because I just can't.  I have a child who is sick.  She can be walking around fine by day and sick as a dog by night.  That is who she is.  I accept that this is the season of our life right now.  I guess I found myself in a place before now, that people mostly knew that about, they don't.  I find my soul aching when I try to explain these issues to people who don't.  Even as the words come out of my mouth, my mind is thinking 'they probably just think I'm lamely copping out'.  That's ok, too.  The Lord knows my heart and the whole situation.  Thankfully, my Mom, just listens and offers support.  (Thank you Jesus, for not giving her more "words" for me this morning.)  As I jump in my car back to pick up Lillian, one of my new favorite songs begins to play...Yaweh, yaweh, we love to shout your name oh LORD....I sat in the car and worshipped just for the duration of the song and found my heart so blessed and relieved.  I came home and received another phone call, this time Lillian's ENT. Her assistant to be exact.  Dr ENT has spoken to Dr Plastic and they want us to make an appointment for a surgical consult.  He wants us to bring the dvd of the procedure.  I have to tell you, friends...I'm unsettled in my spirit over this.  I haven't made the appointment yet. Lillian's ST has offered to attend the appointment. I'm very grateful for that.  It is mildly intimidating for me to face this DR again, who just a few short months ago, pretty much blew us off.  A lot for a Monday if you ask me, but this is our everyday.  Every. day.  Lillian will still be having her surgical procedure Friday, and the rest of this week is full of therapy, school, cross country meets,  bible study, church meetings and much more...Friday will be on me before I know it.  I know so many of my fellow warrior Mama's are bearing much heavier burdens right now, I feel led to share this verse...
Matthew 11:29-30 " Take my yoke upon you and learn from Me, for I am gentle and humble in heart, and YOU WILL FIND REST FOR YOUR SOULS. For My yoke is easy and My burden is light. "

Wednesday, September 7, 2011

Thank you, Jesus

The V&E was a success!!  I was a wreck this morning prior to the test.  The person who was going to go with me couldn't make it and I was a nervous mess.  I asked for prayer on FB, quieted myself in prayer,  and finally called my church and just prayed together with the Pastor.  So many things hinged on the outcome of this test...I was having one of those 'this is too much for me to bear, please take it God' moments.   He prayed with me and then sent our church secretary (also my dear friend)  on a field trip with me.  What a blessing!! Such a relief.  I don't think I stopped talking all the way.  Lillian tolerated the procedure, she did what the doctor asked her to do and we know for a fact this is a stumbling block for her  in the realm of speech and eating.  SO- Dr ENT is going to speak to Dr Plastics directly and see what other "proof" or testing he desires to go forward with a prosthetic or lengthening of the palate.  If he is still not on board, we will seek another opinion.  Guess I'm going to have to start praying over Dr Plastics.  Thank you so much for your prayers...God is good.