Sunday, December 9, 2012

Looking Back: A Floppy Larynx 1st Birthday

 Seraphina celebrating her First Birthday at 16 months old.

The First Birthday. It's a big deal. Not only have you kept your baby alive, fed, diapered and clothed for an ENTIRE year..but you have somehow survived one year straight of not sleeping.
Who knew it was possible!?

Lilli's First Birthday planning started approximately the day she turned nine months. Or if we are being totally honest... I believe I started planning the day after her Happy Unbirthday Party... (what? yes.. I threw her a Happy Unbirthday Party the day she turned 6 months old. There was a cake --made by me with a huge 6 on it--, gifts and the people who adore her as much as I do were there...).
Her --real-- first birthday party was a HUGE backyard BBQ at my parents house--Pooh Bear theme. 70 guests,handmade bee's and even life sized, hand-painted Pooh characters lined the fence. The night before the party my sister and I filled about 100 plastic bear containers with honey and wrote "Happy 1st Birthday Lilli." on them... it was out of control to say the least.

I was already 13 weeks pregnant with Miss Seraphina but it was Lilli's day... she deserved a huge hoorah!

It was a great party... exhausting...but great.

So... Seraphina has been a year old for three months now...and the only thing we have done is ice cream cake and some pictures. I have not even taken her to Sear's for her First Year photo shoot. Her birthday dress hangs in her closet with the tags still on...the shoes she has already grown out of...but never worn. I am a horrible mother. I feel like I have cheated her. That I have let this mess of floppy larynx run  ruin our lives. It's not like I didn't try to plan a party. I did. Then I stopped because... being in and out of the hospital... Not knowing exactly what was going on... It was to much (for me...not her...).

I concentrated on caring for my baby and put the party hats away for another day.

My Plan B was to have a huge party after the sleep study results... because THOSE sleep study results were supposed to tell us what was wrong. Well...the sleep study has come and gone...the results have told us nothing more then we already knew...and my baby still has not had icing smeared across her perfect little face.

What am I waiting for? Why is this so hard?
I don't know. I think a part of me doesn't want to accept that my baby has been through what she has been through in her first year of life. If we have a party. If we have a photo shoot.It is all real. Instead of looking back and seeing all the milestones she has reached and mastered.
I will be reminded... reminded of something I try to forget...everyday.

Since the sleep study "results"...since Friday...Seraphina's last seizure. I realized something. Nothing is going to change this. I can wait for a million test results. I can never leave her side. I can not throw her a party. No matter what. She will STILL have a floppy larynx. She will STILL stop breathing. She probably STILL will have seizures.

And she will STILL be living.
She will STILL be my little girl...with her crazy red hair and a big tooth grin.

So instead of letting her first birthday remind me everything that has happened to is going to remind of everything she has gotten through. Every smile she has made. Every ounce of strength this baby has. Every milestone reached. Every word spoken. Every perfect baby belly laugh. and it's about damn time I celebrate her...for being her...
I celebrate her and that floppy larynx!

Saturday, December 8, 2012

Issac's Story

Around 1 week old, Isaac started projectile vomiting, where he would lose his entire bottle.  Immediately, his pediatrician thought that he was aspirating, so we began thickening his formula (we have tried every thickener possible from Simply Thick, Thick It, GelMix, our own thickener made from Bob's Red Mill Xanthan Gum, Rice Cereal, Oatmeal-what works is a mixture of oatmeal and rice cereal).  From his irritability, she assumed that he had reflux as well.  The thickening seemed to help some.  At least when he would vomit, it would not hit the wall, instead, it was thick and just rolled out of his mouth and onto the floor.  
    I am a new mother (fairly young, 26), but I was still concerned with his labored breathing that we noticed at a very young age.  When I would tell my pediatrician this, she figured that it was the reflux settling in his nasal cavities.  I decided to record his breathing one night and promptly took it to our pediatrician.  When she heard his breathing, I will never forget what she said to me.  She said, "Megan, he stops breathing" as it were breaking news. I was thinking to myself, I told you so.  Now, our pediatrician is excellent and has been proactive with our little man.  I think she probably thought that I was an over-anxious, new mom...which I am (now).  We immediately saw an ENT.  He did the laryngoscopy and I was introduced to the term Laryngomalacia, which was a new one for me.  Our ENT said that it is something fairly common and that most children grow out of it and proceeded to tell me about the symptoms that are typical and the ones that are not so typical  As the weeks passed, we started to notice the more not so typical symptoms: apnea spells, rapid belly breathing, chest and neck retractions, extreme difficulty with eating, projectile vomiting.
   We also went and had a modified barium swallow study completed.  It did confirm that he aspirates, actually pretty badly.  We have to thicken his formula to a honey/ pudding texture, which means lots of oatmeal and extra calories.  So, when doctors would evaluate him, he was thriving as far as weight gain.  I continued to share my concern with his breathing and apnea spells and refusal to eat with our ENT, but he wasn't as concerned due to his weight gain.  While meeting with our pediatrician, he had a spell where he couldn't catch his breath and then vomited a lot of mucus.  At that point, she told me that surgery was necessary.  This meant a lot coming from a doctor that takes the holistic approach when possible.
    Before his surgery, they wanted to confirm that he did not have pyloric stenosis or malrotation.  We had a full upper GI completed.  They were able to eliminate the two problems that would require immediate surgery, but they did confirm that he has extreme reflux (if the spare change of clothes in our diaper bag didn't give it away first).  They also found that his stomach does not empty correctly (Delayed Gastric Emptying), which may require surgery.  We are monitoring this for now.  
    Finding out all of this has been tough to swallow (no pun intended), because everything just seemed to build upon one another.  He also has torticollis, which we have been going to physical therapy once a week in the beginning and now one every two weeks.  
    So, Isaac went into surgery on November 15, 2012.  This was a scary thing for me, due to the fact that he was completely sedated and required a breathing tube.  I had read about this and knew what to expect, but it was still a little scary for me.  The surgery went well.  They clipped the extra/ floppy tissue, but they also had to repair his epiglottis while in there.  The doctor also found that his bronchial opening is smaller than normal, which may require stretching.  I feel like we get a lot of "this may happen" or "this will probably happen in the future" in regards to some of his other complications.  As I said, surgery went well.  Spending the two days in the hospital with an IV and a baby that refuses to eat was not so great.  He required quite a bit of morphine for pain.  He wasn't recovering as quickly as expected, so he was given a strong dose of antibiotics and two doses of steroids to help with inflammation.  We were discharged from the hospital, home for three hours, and then back in the ER.  Isaac got choked, couldn't catch his breath and required somewhat of a Heimlich maneuver to clear his airway.
   After that little episode, the breathing seems to be much better.  They just believed that he hadn't cleared all the "junk" out from surgery.  He is able to sleep on his own (in his Nap Nanny).  Previously, I or my husband would have to hold him upright most nights due to the choking and apnea spells.  Although it meant little sleep, it was comforting to us due to the fact that his breathing was so labored.  We did have some nights where he was able to sleep in his Nap Nanny on his own.  We got to the point where we could say to one another..."tonight is going to be one of those nights".  One reason why I say that I wished I had found out about the CWL sooner (other than the tremendous support) is the fact that it was by trial and error that we found that a Nap Nanny would help.  We realized that he did much better in his car seat, but we weren't comfortable with him sleeping in it.
   So where we are now, is dealing with his eating aversion and taking amoxicillin for an ear infection, which I have found on the CWL site is common for LM babies. Isaac should be consuming around 30 ounces of formula per day, but we are lucky if we can get him to drink 16-20 ounces.  This is a hydration and nutrition concern.  We went back for another swallow study today.  He continues to aspirate basically the same.  Not that it was a fun experience, but fortunately they were able to see his refusal to eat.  We have tried every bottle possible with a nipple that allows thicker flow, sippy cups, cup feeding, and spoon feeding.  For a successful feed, we have to feed him right when he wakes up from sleeping or a nap or when he is falling asleep.  This means little time going out and having to master plan the day.  We have tried all types and brands of formula as well.  We are currently using Enfamil Gentlease or Gerber Gentle.  We were referred to see a nutritionist, so we will add that to his list of specialists and our list of bills.  Financially, this has been difficult due to the fact of the multiple specialist copays, surgeries, studies, pediatrician appointments, etc.  I am a school teacher and have not been able to go back to work due to all of his struggles, but his health is a priority right now.
Written by LM Supermama: Megan