Wednesday, February 29, 2012

Looking Back: Explain Myself

I find it hard some days to be constantly explain myself.
Explain why my baby can't cry...unlike what you think I am not being a "helicopter mom"...I am simply making sure my baby does not stop breathing.
Explain that although she looks "great" she has a congenital defect and needed major airway surgery...and now has something wrong with her heart and brain because of this...dumb defect.
Explain why she can not be left with anyone who is not ready and willing to do CPR on her... it's not that I deny babysitters...I can't...and I don't want to... leave her.

It wears on me... but I know I am not the only one. There are days when I am exhausted. Not exhausted from not sleeping... exhausted from Laryngomalacia. Exhausted from waking up in a panic to make sure my baby is still breathing... exhausted from the numerous doctor visits... surgery... medication... the medical bills... the monitor... the home medical team...all of it.

There have been moments through this journey when I have had to stop... look out my window and ask for more patience and find more strength within myself. I have seen my baby stop breathing.. turn blue and purple...daily... since the day she was born and words can not explain how physically and mentally draining that is...{unless of course... you have been there... then you know exactly what I am talking about.} And somehow I am able to find what I need to get through the day...I am able to give my baby what she needs to get through the day.

Monday, February 27, 2012

A Mother's View: Amy

Feeding Challenges:

Hannah always had a difficult time with feeding. I had been unable to breast feed my son and I made up my mind that this time I was going to make it work. Hannah and I tried in the hospital with minimal success. The only time I could get her to latch was if the lactation consultant did all the work for me. I was a fumbling mess, and Hannah was so weak that she grew tired quickly. Once we got home it got even worse. We would both end up sobbing by then end of each attempted feed, and I finally resorted to just pumping and giving her my milk in a bottle. She preferred this new arrangement, as it meant she didn’t have to work as hard. We went out and rented the hospital grade pump, as well as a fancy portable one. I went to the lactation meetings and even had a few private sessions to figure out what I was doing wrong, but she just wouldn’t latch on and stay there for anything. She got tired, or gagged on my milk once it did start coming. After about 8 weeks, my milk supply started decreasing. I took supplements and ate oatmeal for breakfast, lunch and dinner, but nothing worked. By the 12th week I was averaging about 4 oz a day, which was barely enough for one good feed. We were already supplementing with formula by this time, and I was growing disappointed at my lack of output. I made the decision to just give up on my dream of breast feeding, and focus on other ways to bond.
If only switching to the bottle could have fixed all her feeding challenges. At about 2 months, Hannah started to get really picky on who could feed her. If anyone other than mommy tried to feed her, she would scream and gag and refuse the bottle. We tried to hire a baby sitter to help out for a few hours and eventually take over when I went back to school, but everyone we interviewed had a hard time getting her to eat. One day I had left for 8 hours and she didn’t eat anything all day. I worried every time I had to leave her because I didn’t know if she would be able to eat without me there to feed her. Her weight gain slowed until she was only maintaining. We had to count every little ounce of formula that went into her to make sure that she was getting enough. Some days she would only get 15-18 oz of formula all day. This became her normal intake, and I was at the pediatrician’s every week trying to figure out what I could do. We started to have to “force feed” her the bottles, despite her crying and turning her head away from the bottle, we had to keep making her take it until she got something in her tiny little belly.
One night, I was trying to get her to take her last bottle before bed. She was crying hysterically and refusing to drink it. Singing and rocking wasn’t working, and even after I stopped trying to feed her she was still inconsolable. She wailed and sobbed until she choked on her own saliva, and in between each frantic gasp for air her larynx collapsed and blocked her next breath. I watched helplessly as her red flushed skin drained to a pale white and her cries became weaker until all she had left in her was a whimper and a choked sigh. I was also in tears at this point, and all I could do was check to make sure she was still breathing and try to hold myself together. I held her until I was certain that she was okay, and then I placed her in her crib. I stepped into the hallway and fell to the floor in my own tears. I had never felt so helpless, to watch my 2 month old daughter struggling for air and there wasn’t anything I could do for her. I felt guilty for trying to make her eat, and guilty for her only getting 12 oz of formula that day. I didn’t know how I was going to help her thrive, if the very act of feeding her could make her struggle to breathe.

Sunday, February 26, 2012

BIG News!

Coping With Laryngomalacia, Inc.
is proud and happy to announce it has received official tax exempted,
501 (c) 3 nonprofit status from the IRS!

CWL is the FIRST laryngomalacia (including TM & BM)
nonprofit organization in the United States.

This means, any and ALL donations are now 100% tax deductible!

Thank you to all of our donors & supporters for believing in our mission.
We are beyond thrilled.

Stay tuned... this may call for a party/giveaway :)

Wednesday, February 22, 2012

Looking Back: No Words

I can not find the words tonight...

I try to find words to explain how I feel and I can't.
I can't speak when all I can do is cry.
It's hard to act normal when all I do is live in fear.
I replay the memories of this nightmare over in my head like a bad dream.
There are days when I wake up and think... it must have all been a bad dream.. it has to be.
And everyday.. I am thoroughly reminded this is my life.
This is my baby's life.
I hurt because I can not make her better.
I can not change what she has been born with.
I can only try my best to make it better for her.
To help her.
To accept what we have been given.
I try every day to accept all this.
I ache all the time.
Some days I ache less...some days I ache more.
Either way... its always there.
I am always I will never forget.
I cope so I don't fall apart.
I am strong because my baby needs me.
I watch her breathe...and I am content.

Monday, February 20, 2012

A Mothers View: Kristie


By the time Noah was 10 months old, our pediatrician recommended recording Noah at night time. Night time was when his Stridor was the worst, and he was a very restless sleeper. Sometimes I still think to myself why did I not record him sooner. Then I realize, THINGS DO HAPPEN FOR A REASON.

So I did. I recorded Noah's noisy breathing. The next day I made another appointment with his pediatrician. Once his doctor heard the recording, ( I will never forget his words,) "Kristie, Noah has Laryngomalacia. I do not know the severity of it. I will however, refer Noah to a Pediatric Pulmonologist ASAP." I left there that day in shock. Seriously, what is, LARYNGOMALACIA?

Why are we going to a pulmonologist?

This was actually one of the best days of my life. FINALLY, I had been heard. We had a partial diagnosis, and we were going to see a specialist.
Kristie Stewart

Saturday, February 18, 2012

Super Saturday: A Thrifty LM Mom's guide to saving, organizing and beyond!

If I step on another toy…

When my first child was born and the only one around for two years I did not really notice a mess because my time was devoted to him and cleaning up any toys he had strewn about. Two and half years later and now we have number two. I have less time to pick up toys between my two children, doctors visits, and my full time job. I was in search for a simple, efficient, yet cheap organization system. I needed something that I could pick up quickly and my son could help. I did not want to step on another matchbox car.

I searched all the big box stores for cheap toy boxes, bookshelves, and other storage pieces but soon realized that all of the inexpensive pieces were in fact cheap and would not hold up to my climber! Then a friend suggested I check out online garage sale sites and to my surprise I found tons in my area.

On FB I found several pages devoted to kid’s swaps and home good swaps in my area. I was able to pick up two affordable bookshelves. These bookshelves were definitely well loved but they were solid wood –exactly what I wanted.

I took my two year old with me on a trip to a local hardware store and let him choose what color he wanted for the shelves in the spray paint aisle. After swaying him from the neon pink and orange he chose a nice red color! I then went home and spray painted my shelves (outside or course). I got two magnificent climbing kid friendly bookshelves for under $30!! I placed baskets on the bookshelves for my son to put his tiny toys in and saved shelves on the bottom for his big toys!

Hopefully, this will inspire you to search for those pieces you need to help organize your kids play room or area! If you do not have FB you could also check out craigslist in your area! Happy hunting!

Wednesday, February 15, 2012

Looking Back: But She Looks Fine!

We all look fine, don't we? No one can see the baggage we carry... the tears we are hiding...the pain we are feeling. We are all just fine.

Since the day I started telling people about my baby's diagnosis... "but she looks fine!" became my least favorite phrase of all time. I tried to justify the inappropriate comment by thinking maybe this is their way of coping. If someone looks fine...then nothing can be wrong, right? And yet those words still cut me like a razor. What bothers me the most is that all the anger, sadness and fear I feel on a daily basis is somehow not validated when that phrase is said. That maybe since she looks fine, I should be fine too.
I know the people who say that phrase are not doing it to make me feel that way. They are simply coping the best and maybe the only way they know how. No family member, close friend or parent wants to hear that their baby has a congenital defect... But sometimes in life you can not pretend. Sure, I would love to pretend my baby is fine...but I very well know I can not. I do however, have faith that in time she will be fine and until that day ... rather than hearing..."but she looks fine!"... a hug would be much more appreciated :)

Monday, February 13, 2012

A Mothers View: Becky

Hi All!
Hope your all well!
I started last week by sharing our journey briefly from the start, but other than LM we have had other issues along the way including reflux, and various medicines! When Hollie was 4 weeks old (xmas day) she came out in a horrible red blotchy rash! We had her checked over boxing day and after a trip to hospital medical professionals told us that it was Eczema, gave us cream and sent us on our way. In May 2011 when Hollie was 5.5months old we were discharged from ENT, as Hollie had apparently grown out of her LM! Fantastic news! We had a minimal stridor and reflux meds still but thats all! However i still wasnt happy, the rash on Hollie continued to be present for months! After numerous visits to several GP's and several creams to try for Hollies Eczema, getting told repeatedly it was a viral rash, id had enough! Hollie was now 7 months old and consistantly red, blotchy and itching regularly! I went down to my GP and demanded yes demanded a referral to a dermatologist! In the mean time my gp changed Hollie's milk to Soya BIG mistake she threw up every feed and constantly had diarroah! We were admitted to hospital with risks of dehydration. The hospital then changed Hollies milk again to pepti-junior, but this increased Hollie's reflux, we went to a different hospital, who put Hollie back on her original milk, within 24hours no sickness, and no diarroah, and her reflux had again settled, however Hollie still had her rash. In my head i had an opinion of what Hollies rash was as i too suffer from various skin rashes, and it looked similar to mine.
We were referred to a fantastic dermatologist called Dr Garg, she actually listened to me! Me, Hollies mum, who had fought with many medical staff to be heard, to get the care my daughter needed! Hollie was diagnosed with Urticaria. Urticaria is a hives rash and usually appears when a person has a reaction to something, i too have Urticaria and mine flares with sun, grass, and pet hair. The task now was monitoring Hollie and seeing what/ if she reacted to something in particular. We were given piriton and cetraben cream to help with Hollies itching and my god did it work! Hollie was like a different child! Happy and content and itch free although the rash was still present. Now we had a diagnosis things were becoming easier to manage - or so we thought! This was only the start of our long battle of future hospital visits!
Love Becky

Wednesday, February 8, 2012

Looking Back: The Grass Is Greener

I have never been the jealous type. I have always tried very hard to want what I have not what I don't. After my baby was diagnosed... that whole way of thinking quickly changed. My days were now spent in doctors offices.. hospitals...with loud monitor alarms... it went on and on... I quickly began wanting... wishing... needing what I didn't have... a baby without health issues. I needed my baby... better.

Around the time I gave birth a large group of my friends did as well. I excitedly welcomed them into the secret club called Motherhood... but deep down I was falling apart. I was painfully jealous. Jealous of their "perfect" healthy babies. Every time they told me how great Motherhood was...I was reminded of how my horribly scary mine was. I desperately tried to not breakdown when I was told how wonderful breastfeeding was going or how easily Baby settled into their life. So many times I have wondered what did they do that I did not. Did they eat more apples than me? Maybe they slept on their left side longer than I did. Why were they given babies without health issues and I was ?
I carried a monitor while my friends carried a stylish diaper bag. While they were all on play dates while I was getting a tour of the PICU. My heart was breaking while theirs was growing.

I am sure I am not the only one who has ever felt this way... it is only human nature to want what you don't have... the grass is always greener as they say. You can choose to drink from your glass half full or half empty. Turn the negative into positive. If that is the case... I will take a half full glass of positive! :)

Tuesday, February 7, 2012

A Mother's View: Amy

My pregnancy was a long nine months, filled with numerous health concerns. I developed a rapid heart rate that made even the simplest task exhausting. I was advised to start beta blockers while in my 9th week of pregnancy. All I could think about was my baby’s rapidly developing body, and how afraid I was that any medication I took could interfere with the development of the baby growing inside me. I decided that it wasn’t worth the risk and refused the medication, then waited for my health to get better; but my heart rate just kept getting faster and faster until I wasn’t able to work or even care for my other child. Over the next several weeks, there were two trips to the ER, and each time the doctor told me that there was nothing they could do for me if I wasn’t going to take the medication. I had reached the second trimester, and I realize that my immobility and anxiety were probably just as detrimental to my unborn child as the medications, which were a category B. We decided to try the medication and see if I could regain some function of my old daily life. The medication helped some. My heart still beat way too fast if I tried to walk long distances, but I could at least get around the house and take care of my son. I was constantly worried about what affects my rapid heart rate and medications to treat it could be having on my baby. At my 37 week prenatal check-up, my OB informed me that my platelets were becoming too low. He was concerned that if we didn’t induce right away, that I might hemorrhage and be unable to control the bleeding. So we scheduled an induction for the following Monday.
We arrived at the hospital on Sunday night so that the nurses could prepare us for the induction. When we arrived, my daughter was lying breach. They talked about C-sections in the morning and I started to panic. I asked the nurse for a big bag of ice, and I spent the entire night with that bag of ice sitting on my daughter’s head at the top of my swollen belly. I could feel her wiggling and squirming inside me, trying to get away from the unpleasant cold sensation. All I could do was hope that my daughter would take the hint and do what mommy was pleading with her to do. I finally fell into a restless sleep a few hours before the scheduled C-section.
I was awaken by my OB at 7AM, he brought in the same ultrasound machine that the nurses had used the night before, just to make sure one last time before prepping me for surgery. When I saw that my daughter had flipped completely around and was now lying head down, I was so relieved. My water was broken and the induction was started. I had wanted to have my daughter naturally, but after 8 long hours of contractions and no progress, I found that I could no longer take the pain. I opted to have the epidural. As disappointed in myself as I was, I believe that it actually helped move things along. Thirty minutes after having the epidural, my 6lb 10 oz daughter came gurgling into this world!
I remember thinking, “shouldn’t she be crying more?” But at this point, I was so exhausted that I went on auto-pilot and just waited for someone to tell me that she was perfect or something was wrong. After what seemed like an eternity, they finally brought her over to me wrapped in blankets. She was still covered in the white vernix, confirming that she was still relatively premature and could have stood to cook a little longer in mommy’s oven. She was so perfectly beautiful despite being covered in all that goo, her little eyes rolling back in her head and her gummy mouth squished into a tiny pucker face. I wish I could remember more about that moment, it all seemed to fly by so quickly.
The first few nights in the hospital were pretty uneventful. She was still so small that it didn’t take too much effort for her to breath. She made little squeaks every now and then, but all babies do that, right? Her only problems were keeping her temperature up and her blood sugar being too low. She was so tiny and skinny, her legs wrinkly from the lack of fat that she could have used if she had been allowed more time to grow in my belly. The third day she started getting a little jaundiced, but nothing so terrible that she had to stay in the hospital. We were discharged and brought our beautiful Hannah back home with us.
The first thing that we noticed about Hannah was that she never cried. At her one month check up, I even asked her pediatrician if it was normal for a baby not to cry. They said I should just consider myself lucky. When she was hungry, she wiggled and grunted, but never actually cried. She never complained about being wet or dirty, and still only grunted when she was cold after her baths. Now that I look back, I wonder if that wasn’t because she was so tired from just breathing that she didn’t have the energy to actually cry for her needs.
At about 6 weeks we started to notice the less than normal squeaking. Sure, all babies make weird little noises, but I could tell that these were something different. There was something wrong with my perfect little baby. We laid her on her back to sleep, but every 10 minutes or so she would flail her arms out and let out a high pitched squeak as if gasping for air. As soon as I picked her up she was able to clear her throat and after a few frantic seconds would calm down and drift back to sleep. This continued all night long, to the point that no one was getting any sleep. I approached her pediatrician and asked what could be causing these spells. Her reply was, “All babies squeak. It’s just what they do.” I couldn’t accept this for an answer, so I went online and I googled until I found articles about LM. The symptom sounded just like what was happening with Hannah, so I printed it off and carried it with me to my next visit. My pediatrician informed me that “Yes. That could be what it is. However, there is nothing you can do about it; she will just have to eventually grow out of it”. I thought of my daughter struggling to breathe every night for the next two years, and I said, “No, that’s just not acceptable.” What can I do to make this easier for her to live with? What do I do if it doesn’t get better, if it gets worse? What are our options? What can I expect our lives to be like until she does grow out of it?
I insisted to be referred to an ENT at Vanderbilt Children’s Hospital. It was there that my daughter was scoped and they confirmed that she did have Mild LM. The doctor informed me that it would probably get worse before it would get better, and she gave me a prescription for medication to give her in the event that she should get any sort of respiratory illness. She informed me that if she did get sick, it would be far worse than for a child without LM, and that it might take some quick action to ensure that she wouldn’t have to be hospitalized. Although I appreciated her honesty, this revelation scared me to death. I was supposed to go back to school in a few months, who could I get to watch my daughter? Would she be safe in a daycare with lots of other kids who might get her sick? How serious could it get? Could she die if she did get sick? How could I protect her?
To be continued..