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!