Looking Back: Watch & Wait

When a baby is diagnosed with laryngomalacia there usually is a watch and wait period. This period is usually within the first three months of life and is really to decide if doing a supraglottopasty is necessary.

We all have our wait and watch stories....

With S our watch and wait period was a total of 4 months. The longest four months of my life may I add. I watched my newborn struggle to breathe. I watched her lungs retract with every breath. I watched her stop breathing all together. Those "memories" I have from the first four months are forever engraved in my mind and heart. Although I would love to forget I know I never will.

Through those four months I waited for a doctor to help my child. I was told she probably didn't need surgery and by her first birthday the laryngomalacia would go away-I just needed to wait {looking back I wonder if that was the doctors way of telling I am crazy impatient...ummm}I waited and waited for some improvement.Then the apnea monitor came into the picture, followed by the confirmed sleep apnea, the severe GERD which had already done damage to my baby within 5 weeks of life, the medication to control the GERD, the retractions that would not go away no matter what position I put her in, the cyanosis but most of all the left ventricular hypertrophy of the heart. That was the reg flag. Our clue that this watch and wait period NEEDED to be over.

S was around 3 and half months when we found our current ENT. He scoped S and before I could read him my log from prior three months he looked at me and said, "your baby needs surgery...sooner than later." He then told me the watch and wait period was long over since the LM had now affected another organ-her heart.

To this day I feel extremely guilty about those first four months. I feel like she suffered and I watched her-I let her suffer... when in reality I was fighting the hardest battle I ever fought to get her the care she deserved because I knew deep down...she needed more. I also felt guilty because when I left the ENT's office that day I felt a huge sense of relief. Putting your infant through surgery should not make you feel good...but I knew it was the best thing for her. I felt guilty for feeling like that. Horrible I said yes to surgery... and ...relief because it was the best thing for her.

And now when I hear her laugh with out choking... I know very well... over and over again... it was the best.thing.for.her.
It may not have all happened the way I wanted it, how I wanted it...but it happened the way it was supposed to happen.

A Mothers View: Brittany

HI Everyone,

Most if not all don’t know me. My name is Brittany.  I’m 25 years old and a mom to three beautiful kiddos. My oldest, Chloe, is going to be 7 in a few months, my middle son, Nathan, is going to be 5 this month and my youngest, my LM baby, is almost seven months old.

My pregnancy with Lucas was a rough one from the twenty week mark. I learned he wasn’t really growing, being two weeks behind and then four weeks. They diagnosed me with IUGR, intrauterine growth restriction, and said I was high risk.  I went to ultrasounds weekly, doctor appointments weekly and non-stress tests (NSTs) weekly. I felt like I lived at the hospital. That went on for the last twenty weeks and it’s was stressful and scary. I went from expecting a seven or eight pound baby to being told he would barely weigh five. I was induced the day before my due date. Twenty-three hours in labor, my six pound fourteen ounce baby boy was born. Lucas had to have a NICU consult. He very jittery after he was born. Thankfully, he didn’t have to spend time in the NICU.  He did have jaundice and was coombs positive. He ended up under the billi lights and the billi blanket the night before we were going home.

Lucas was a clicker. When he sucked all you could hear was him clicking. Never heard it before and the nurse and lactation consultants all said it to be normal. NORMAL, is there such a thing as normal? Just a six letter word makes all the difference when it is used to describe your child. Lucas would stop breathing while eating and again, it was said to be normal. He was my first that I was nursing, so who am I to say what is normal, right?! Lucas continued to “click” and gasp for air as he was feeding, whether be nursing or bottle and I didn’t know better and thought it was normal.

Over the next few weeks, I will share our highs and lows throughout the past few months. How our goals for Lucas have changed and how I myself have changed my whole outlook as a parent. No one ever said life was easy, but they sure didn’t tell you how hard it’d be with an LM baby.

Until next time, breathe easy!

Brittany

Looking Back: Dear Laryngomalacia

Dear Laryngomalacia,

It has been 9 months to the day since you forcefully introduced yourself in my life.In my baby's life.In my family's life. It's odd to me to think 9 months. 1 day. ago I had no idea who you were. I had no idea how life was going to completely change...for the better...for the worse. I had no idea how to care for a baby with LM. I had no idea how to cope.

You make me angry. You make me very angry. I have never felt such strong, raw anger until I met you...Until you took away my newborns breath as well as mine. Until I had to hold my baby down while a doctor took a scope and stuck it up her nose and as she screamed and gasped for air all I could do was pray she was okay. And then the blood started pouring from her nose...she was blue/purple and the doctor looked at me and said... "your baby has Laryngomalacia."....and then angry can not possibly describe the feeling from that moment on.

You make me sad. So sad. Sad that I have wished away my baby's first 9 months of life in hopes of something better for her. You have made me cry harder than I ever thought I could cry before. I have cried because you have made my heart ache so painfully. You made me cry as I signed the papers saying I understood there was a chance my baby wouldn't make it through her surgery. I have cried as I watched other baby's cry...and not choke. That hurts. A lot. You have made me cry until there are no more tears left.

You have betrayed me. LM is supposed to be only noisy breathing. An annoyance for the parents rather than a life threatening condition, forced upon a child. You were suppose to improve within the first 3 months without medical intervention. We were "watching & waiting"...waiting for you to leave...you were suppose to leave. You are and never have been welcome in my baby's life. And then, when I thought you wouldn't betray me again you did. You affected my baby's heart. Because of you she struggled to breathe so hard.for so long. her heart needed to work overtime 24/7 so it started to thicken. And as I stood there in the pediatric cardiologists office while the doctor told me this condition could turn into heart disease...I have never hated you so much in my life. I had to hold on to the side of the examination table while she drew a diagram of my baby's heart...showing the damage you had done. And at that moment I have NEVER wanted to escape from my own life so badly before. How dare you. How dare you hurt her.

You have made me witness things I never thought I would have to nor I ever wanted too. I never thought I would have to hear an alarm go off telling me my baby has not taken a breath in 20 secs...and I now have 10 secs before I need to start CPR. That I would have to see my infant laying there...pale and lifeless. I hate you for that. I hate that you made me feel like she was going to leave me every night. That I would never be able to get her back. I will never forgive you for that. I will never be the same because of that. A mother should never have to feel like that. A mother should never have to pray her baby wakes up in the morning.

You have destroyed me. You have broken me into a million pieces and 9 months later... I am still slowly putting the pieces back together. I see how you have broken my baby. How she fears being on her back...because of you. It.Is.Your.Fault.
The pain you have caused me. The pain you have caused my baby has been unbearable. There are days {most days} when I wish you never existed. I wish I could wake up in the morning and the past 9 months was a complete nightmare. But it never happens. I wake up to my life. And you are in my life. You are in my baby's life...so I can either hate you forever or accept you and try to move on. Try to live in peace. Try to heal.

Our relationship will probably always be a "work in progress." A love/hate relationship for sure.

But I do have ONE MORE thing I would like to tell you Mr. Laryngomalacia...

F U. YOU SUCK.

Love, Steph

A Mother's View: Amy

I haven't been able to spend much time with my family for the past few weeks. Well, I guess you could say for the past year. I am in a nursing program that keeps me constantly preoccupied with writing papers, twelve hour clinicals, and a never ending need to study. It's been hard juggling school with family. I always feel torn with what I need to do to succeed in my career, and my desire to spend time with my children. It feels like to truly succeed at one, I have to be subpar in the other. I have really missed out on a lot of quality time with both my children this year, and I really regret not getting to be there to watch most of Hannah's firsts. I stayed at home with my son until he was in kindergarten, and I feel like our relationship will always be strong because of that, no matter how unavailable I may be at the present. When I return, we still have that bond and it's not hard to regain the closeness that we have always shared.
My biggest fear is that I won't have the time to develop that bond with my daughter.  She has spent her entire 13 months of life being bounced from grandma to grandma, nanny to new nanny.  I only get to spend a few hours with her before I have some other test to study for or another 12 hour clinical that will keep me from seeing her all day. I feel like I have missed out on her entire life so far,and I only hope that it is something I can make up for this December when I graduate.
I will get to spend the entire summer with my kids; no more distractions, just quality time and attention to try to build a relationship that can sustain us for one more semester. I envy mothers who can stay home with their children, but at the same time I really love what I do. I love caring for others; I just need to figure out a way to not feel so guilty when I have to not be here to care for my own family.
My plan for the summer is to devote myself to my children, make lots of happy memories, and stop being so hard on myself for not being there lately. We are going to play in the pool, take walks in the woods, take a trip to the beach, and sit on the front porch licking Popsicle's and being silly! I can't wait for the fun to begin! It is going to be a summer to remember!

A Mother's View: Amy

On two separate occasions, a small child has come up to play with my daughter and asked me what was wrong with her eyes. I look at my daughter, and I see nothing but perfection. I think surely this child is just confused.

Hannah already has a pretty long list of diagnoses for a 12 month old baby. She was born with laryngomalacia. She developed torticollis and plagiocephaly at 3 months of age, but that has mostly resolved after 6 months of physical therapy. She is splay footed and needs braces to keep her feet aligned properly, and we are still going to physical therapy to help correct that. She still can't walk and probably won't be able to for a long time. Isn't that enough things wrong with just ONE little baby? Does she really need to have something else for me to worry about?

We went to the pediatric optometrist this afternoon, because I just couldn't get over all these small children and their innocent comments. I thought, "Surely they will tell me that Hannah is fine or that whatever they are seeing is something she will simply grow out of".

Within a few minutes of assessing her, they told me that those children were right. There is something wrong with my daughter's eyes.

Superior Oblique Palsy of the 4th cranial nerve.

Yet another genetic abnomality to add on Hannah's list of things that shouldn't have happened to such a sweet and loving little baby.

We go back for an evaluation in 3 months. If it doesn't resolve in 6 months to a year, she will most likely need surgery.

SURGERY.

If this doesn't get fixed, she might have a hard time learning to walk, have double vision, have to wear prism glasses (which I am sure the other kids wouldn't give her a hard time about..) or a patch over one of her eyes.

She might have to grow up with strangers constantly asking her "What's wrong with your eyes?"

I know I am being vain, it's not life threatening.

"It's not that bad, it could be worse..."

Well. It could be a lot better too.

I could have given birth to a healthy baby girl, who didn't have to struggle to breathe.

Who didn't have to struggle to reach her milestones.

Who could effortless begin walking and didn't have to wear braces.

Who had perfectly symmetrical eyes and never was approached because she looked "weird".

I am just so tired of her always having to have something "wrong" with her.

When it seems like we have fixed one thing, something else pops up and she is broken again.

When does Hannah get to know what it feels like to just be a normal little girl?

Not the baby with LM.

Not the baby having to do strenous physical therapy that exhausts her because her head tilts to one side or she is behind on every milestone.

Not the baby that has to have surgery.

Just Hannah.

The happy little girl who loves to smile and gives hugs to all of her stuffed animals.

Who is brilliant, knows sign language and says 6 words.

Who loves to play outside and eat the clovers despite mommy's protests.

When does this poor little baby get to stop fighting to acheive what other kids are just born with?

Looking Back: Life's Plan

We all have our life plan planned out. When we are going to get married, when we are going to have babies and so on. It's all there and even though some people plan more than others...we all have somewhat of a plan...some idea of where we are headed in life.

So what do you do when your life doesn't go...as planned?


I am an extremely planned out kind of person. I love a plan... I love a "to-do" list... I love always knowing what comes next because I am to impatient to wait and see.

With that said I can not stand surprises!

Surprise! Your baby has Laryngomalacia! That is kind of how it went when S was first diagnosed...and I stood there fumbling through the pages of my life trying to find Laryngomalacia in my plan for having a second child...it's 8 1/2 months into it and I am still looking, just so you know.

I fought Laryngomalacia everyday...I fought even harder when S would start to struggle. I desperately tried to change life's plan into my plan.

I can sit here and tell you my life was turned upside down, my heart has never ached so painfully before, my life has never been the same...I will never be the same. While all of that is true I truly believe life has a plan and we can either dwell on the bad or learn the lesson it is trying to teach us.

Laryngomalacia has taught me a lot about life.
S has taught me a lot about life,love and faith...more than she will probably ever know.
Life has taught me a lot about myself...and that I can throw my plan out the window :)

Looking Back: Mom of The Year

I make my own baby food for S {and use jar food on the go or when I am being lazy}...
who can I contact to receive my Mom Of The Year Award? :P

In light of the formula moms vs. breast feeding moms... which has seems to exploded thanks to Facebook and the Similac recall that just happened. I figured it was time for me to voice my thoughts. To stand up for us LM mamas and everyone else in between.

I find it disgusting how as a mother-you need to take a side. You can go ahead and say you don't have too...but lets all be honest. You do. As soon as someone finds out someone else is pregnant... before they even say congratulations they want to know "are you going to nurse or bottle feed?" Like for some reason it will affect THEIR life. Face it, we have all done it. We have all asked that question. We have all been ASKED that question. And no matter what the response from the mom to be-it is wrong. If she plans on nursing-she has no idea how hard and time consuming it is. If she plans on bottle feeding-why doesn't she want to nurse? If she plans on deciding when the baby gets here-she needs to be more organized. We are only setting mothers up for failure-why?

And then the blame falls on the formula companies for pressing their products- for sending coupons to your home, from the hospitals and OB offices for making formula samples available to a new mom. Work environments not supporting breastfeeding/pumping.

But the real blame needs to go on the other mothers. The other mothers putting the pressure and judgment on mothers who do not view baby raising the same way they do. All the other stuff are definitely bumps in the road but I feel like-if your really set on doing something {specially as a mother} you will do it... regardless.

Either way... support don't judge.

And then us LM moms come in. For me... nursing S was a wonderful {pretty easy} experience until she started choking and gasping for air while nursing. By the time she was actually done nursing... it was time to start again. Which caused me to get a double breast infection with golf balls under each arm... fun times! Obviously it was not working for either of us. Even with bottle feeding...it wasn't until after her surgery she was actually able to drink a bottle without choking and turning blue/purple.

After you put your 4 month old through major airway surgery then see her struggle to breathe in ICU while on morphine, oxygen and steroids to keep her lungs open... bottle or breast does not seem to matter anymore. Whatever works...matters. Whatever gets you and your baby through the day...matters.

And you want to talk about bonding? Bottle feeding moms can not bond with their babies? I am only speaking for myself right now... but can you tell me the bond, the love you feel to your baby when you hand her over to a stranger as she goes into surgery? As you sit in the waiting room... unable to breathe because something is missing in your life... she is missing. The bond between a mother and a child is untouchable-unbreakable...regardless of how her/his belly is filled.

At the end of every day we are all doing the very best we can.

So unless you can find me the direction manual on Raising a Baby in 2012... you can close your mouth.