O's fight to live!

This is a CDH success story.

I found this poem on another blog that  I found helpful it gave me strength when I felt weak.
“I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.
I know disillusionment as I have been betrayed by my own body. I have been tried by fire and hell many never face, yet given time, I stood tall.
I have prevailed.
I have succeeded.
I have won.
So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.
I listen.
And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.
I have learned to appreciate life.”
Aurthur Unknown
What? Were gonna be parents!

Hubs and I were pleasantly surprised when we discovered that we were pregnant with our first baby. Shocked would be an understatement. We weren't  trying at all. In fact I was on birth control. We talked about having a family and always new it was in the cards for us we just had no idea how soon our family of two would soon be a family of three. Once we got over the initial shock "WERE GONG TO BE PARENTS" we were on cloud nine. We had some concern right away. With me being on  birth control we new I immediately needed to stop taking it. Another concern was my seizure disorder. The medication I was taking at the time could possible be harmful to my unborn baby. I was terrified knowing that I was taking medication for the first six weeks of pregnancy unbeknown to me  that could cause severe birth defects like Spina bifida and Nerul tube defect.  I  immediately stopped all of my medications. Stopping all of my mediations could be potentially dangerous. The risk of me having a seizure go way up.The risk of continuing taking my medication  were greater. I didn't have a choice I needed to do what was best of our  baby. With out medication it would only be a matter of time before I stared having seizers which could be harmful to our  baby and myself. In order to keep my seizure disorder under control I began to see a natural path and started taking natural supplements. They were completely safe  for our  unborn baby and they were keeping my seizures under control. It was a win win.

At twelve weeks we had our first ultra sound. It was amazing to see our little baby.To hear a strong heart beat. That's when it became rally real.  WERE GOING TO BE PARENTS! Holy batman this little life we are responsible for. From that moment on Hubs started calling our little growing babe a pot sticker.Kinda weird, I know.That's what our little babe resembled at the time. We both were beyond  excited to be parents.

We had another ultra sound a few weeks later to get a good look at our little pot sticker's spine. To rule out spinal bifida. I also had blood work done to rule out Nerul tube defect. While we waited for the results we prayed "please god let our little babe be healthy" It felt like an  eternity,waiting. A week or so went buy and finally  We heard the news we were hoping to hear our little babe tested free and clear of both birth defects. Our prayers were answered. Thank you GOD! thank you GOD Our growing little pot sticker is gonna be just fine. 

The next few weeks were a breeze. My belly was getting bigger and bigger by the day. I was filled with so much joy. I loved being pregnant. I felt so blessed to feel this little babe of ours move around. I really felt at peace that our little babe (aka Pot sticker) was going to be born healthy. Placed in my arms right after birth and nurse like a champ. The natural supplements I was taking were still working for the most part. I did have one grand-mal seizure. It only lasted a couple of seconds. I was told by the ER doctor that if I had another one that I would have to consider getting on a different type of anti-seizure medication that would be safe for our unborn baby. The seizure didn't faze our little babe. Strong heart beat check. My cervix closed check. Having a seizure while pregnant can block the oxygen to the unborn babe and it could also cause preterm labor. Neither one of these we wanted. So with all that being said I was monitored by the Doctors and my natural path. I wanted to go as long as I could before having to take  any anti-seizure drug. The longer I go the better for our babe but I was also in fear of having another seizure. They are horrifying. I wouldn't wish a seizure on my worst enemy. If I had enemies.

CDH, what?

The day the storm blew in was the day of my twenty week ultra sound. I didn't think anything of it except that we were going to find out the sex of our little babe. Boy or girl. It felt like Christmas morning we couldn't wait to find out if we were going to have a son or daughter. It never occurred to us that my pregnancy and our life's were about to take a Jurassic turn. We left  on top of the world "we were having a BOY!" We were so excited we immediately started calling everyone we new to share our  news. Hubs went off to work with one of the ultra sound pictures of our son and I went home.

We were having a BOY! a baby boy our baby boy. A son. Our son.Oh boy were we excited!

The storm didn't really hit until quarter after seven that night. I was happily online registering for all the baby stuff when my phone rang. I looked down at my caller ID. Unfamiliar number. I picked up the phone "hello" that was out of my character. If I don't know who's calling I usually let it go straight to voice mail. Something told me to pick up that darn phone. On the other end of the line I heard my O.B's deep Russian accent. My heart dropped. I new something was very wrong.I tried my hardest to remain calm.My heart began to beat rapidly. He began to explain  that the tech noticed that our baby had a  fatal birth defect known as Congital Diaphragmatic Hernia. I had know idea what the f***k he was talking about? Come to think of it the tech did leave the room several times during this morning's ultra sound. I didn't think anything of it, Until now. Wiping tears I asked him "could you please call my husband at work and explain all this to him?" I was a hot mess. I new I wouldn't be able to explain clearly all the medical information. My O.B replied " yes but I need to make this quick, I have been at work all day" are you f***ing kidding me! That was the last I spoke to that jerk of an O.B. When I hung up the phone I collapsed to floor sobbing yelling "why god?why our baby? why our son?" I felt as if my heart was being ripped out of my chest. All our hopes and dreams for our son being born healthy were gone.

Hubs came home from work early. He picked me up off the floor and we sobbed in each others arms. Well I sobbed he remained calm.Trying to be strong for me, for us.He shared with me what that jerk of an O.B told him "that their was no hope for our son. he highly recommend having  abortion" I was stunned. I had know idea that was even a possibility at twenty weeks gestation. How could we just abort this little life?I can feel moving inside of my womb. Our son, abort our son! That was not a possibility for us. We new we couldn't give up hope. Hope that our son would beat the odds and be CDH survivor.

The rest of my pregnancy was filled with many Doctors appointments, Ultra sounds, test after test. Instead of researching  for a pediatrician. We were researching for the best pediatric surgeons.Touring through a NICU. The Doctors kept reminding us that our baby is going to be born sick,very very sick.Baby's born with CDH need to be in the level three NICU. Where the sickest babies are cared for. Many tears were shed. We prayed and cling ed on to hope.Hope gave us strength. We found hope reading  CDH survivor story's and even having the pleasure of meeting a sweet vibrant baby boy who fought the fight to survive and won! Meeting with him and his parents gave us hope for our sweet son.

A Warrior is born


Four days before my scheduled induction day my water broke.  I was in a panic.  I wasn't ready. Not now. Please god just let me carry my sweet boy safely in my womb a little longer.Please, I begged. With me being the procrastinator that I am I didn't even have our bags packed. I was terrified of the road ahead.Afraid of the unknown. Afraid of the CDH roller coaster ride. This was one ride I wish I could avoid competely but this was the ride chosen for us.For our babe.No time to be weak I needed to be strong for our son.

Twenty -two hours of labor (three hours of hard core pushing) It was decided that I needed a C-section.I cried this was the last thing I wanted. Our little babe was sunny side up (face up) so with each push he would go down then back up. I was exhausted and at that point I just wanted the whole labor thing to be over. Cut me open and get him out already!

at 2:32 pm on the day of January 25,2008 our little warrior O was born

Before you were conceived I wanted you.
Before you were born I loved.
Before you were here an hour I would die for you.
This is the MIRACLE OF LIFE.

O had a first couple of really good days.We were so thankful. Then he started to really take the turn for the worse. The Doctors prepared us for the "unthinkable". We were on pins and needles. Praying for a miracle. We never gave up hope.I was terrified this wasn't how I imagined how the birth of our son would go he should be cradled in my arms. We should be home..Instead our only son was in the level three NICU on life support fighting for his life. Terrified is an understatement.


Finally at seventeen days old O had his repair surgery right at his bed side in the NICU. He was so sick and fragile his amazing surgeon didn't want to risk moving him to the operating room. That was the longest four and half hours of our life. O's surgery was anything but easy. His spleen bleed to death. He lost a lot of blood  he had to have several blood transfusions.(thankful for people who donate blood, thank you!) He was missing 90% of his diaphragm on the left side. His stomach and bowl were in his chest. Which pushed his heart over to the right. His lungs were underdeveloped.The amazing thing about lungs is they continue to grow until a child is eight years old and even though O's lungs were small their was hope.

He was still in critical condition. The next several days will be tough for O. The Doctors and Nurses reminded us " he will get sicker before he gets better " Which is really common for babies born with CDH.

The day after his BIG repair surgery hubs and I walked into the NICU feeling GREAT. Our son is truly amazing. Yes he was still very very sick. I new in my heart now that  O fought through this major hurdle he was only going to amaze us and continue to fight and kick CDH's ass.Before we were able to walk over to O's bed side one of his Doctors stopped us dead in our tracks. "Wow! I thought O died last night! his surgery didn't seem to go to well, you know he is doing okay now but he will get sicker before he gets better." My first instinct was to give her a bitch slab. I took a deep breathe before I said anything  I would re-great and walked over to my little warrior all bandaged up from war. Keep in mind at this point O was stable. Still critical but stable.This was the one Doctor who had the worst bed side manor. From day one she had very little hope that our son would beat the odds and survive. I new O would prove her wrong. He was only going to go up from here. And that he did five days later he came off of the ventilator breathing with the help of oxygen.That very same day we held him for the very first time. He was  twenty two days old.

Three weeks later we were bringing our little miracle home.It seemed so surreal. We waited for this day for so long. Their were days we weren't sure if this glorious day would ever come.We had so much to be thankful for. We new he wouldn't be at this point with out his awesome surgeon, Nurses and all of the NICU Doctors even the one with the horrible no good bed side manor.He was breathing room air, and only on two medications one for acid reflux (another common thing for babies born with CDH) and an antibiotic(for the loss of his spleen)  he will have to remain on until he is three to five years old.

Hip hip hooray were going HOME!


The next few months were pretty uneventful. We were happy being a little family of three at home. I was anxious and worried all the time that O's hernia repair might   re-herniate. My biggest fear. Since he only had 90% of his left diaphragm his surgeon had to get  creative and and tie the gore tex patch (his make shift diaphragm) to his rib cage. We were told he had a 15% chance of having a recurrence. With that being said O had to have a routine x-ray every three months. We lived each day to the fullest. With every sleepless night I was oh so thankful for our healthy little man. Our miracle. Our CDH warrior.



A CDH Mother's biggest fear


At nine months old with a routine x-ray we learned O had a recurrence.My heart dropped with this news. My fear was now becoming a reality. The day before his daddy's birthday O had his second repair surgery. Once again we were on pins and needles. This time his surgeons wanted to approach the situation with a less invasive approach, endoscopic . Surgery went well,so we thought.

The next day was a night mare. O was feeling miserable with a high fever and we learned after another x-ray and CT scan that  some of his bowl was still  poking through his diaphragm. He had to have a third surgery the following day.Two surgeries in three days.We weren't thrilled. I felt really uneasy having to hand my nine month old pride and joy over to the Nurse again. This wasn't part of the plan. Two surgeries! Not the plan, dammit.


O pulled threw like the warrior that he is. Two surgeries in three days ( a total of 7 hours in the OR), six days in the hospital we were bringing our sweet boy home once again.Thank you god! and thank you to all of his amazing Doctors and Nurses.  We love each and every one of YOU!




Not again!

We continued to live life to the fullest. O hit all of his milestones right on track. We are so proud of our little man. The biggest issue we had was getting him to gain weight and eat like a real boy. Considering every thing he has been through this issue was minor.

A week before his second birthday O had his last scheduled routine X-ray. When I was told this would be his last schedule X-ray. I felt uneasy. It was never fun taking our little man to have an X-ray but with each X-ray  gave me peace of mind that his gore tex patch was still intact. O never showed any sign of having a recurrence. Each time we found out was through an X-ray.Knowing that their would not be anymore scheduled X-rays concerned me. what if O had another recurrence? what if he showed no signs until he got so sick it would be to late?

His surgeon gave us a thumbs up after taking a look at O's last scheduled X-ray. A few days later we got a call from his awesome surgeon. He took another look at O's X-ray looks like he had another recurrence. My heart dropped with the thought of our little man having to go through yet another surgery, another hospital stay.I was thankful for his thorough surgeon taking a second look.Just another bump in the CDH roller coaster ride their is nothing we can't handle.Nothing O can't handle.

Since O wasn't showing any signs of being uncomfortable. His recurrence didn't seem to affect him at all. His surgeon didn't feel the need to rush him into surgery. He wanted to meet with a team of surgeons to come up with a better game plan for O. His surgeon never had a CDH patient have so many recurrences. Leave it to our little man to be his first.

While we waited for the team of surgeons we tried to keep our routine the same and have lots of quality fun family time. We also tried to prepare our two year old for another stay in the hospital. Every night for the two months before his fourth surgery we read him a book about going to the hospital.It became one of his favorite books. I was nervous for this hospital stay. O is much more aware of his surroundings.I new this would be a difficult  for him. On the bright side hubs and I were familiar with the hospital we new both of us could sleep in O's room unlike when he was in the NICU.

Fourth times a charm


March 31,2010 we drove our sweet boy to the hospital before dawn. I was anxious and just wanted to get this all over with. So we can move on. So O can move on. I felt confident in the team of surgeons. This was the longest surgery to date eight and half hours long. O once again handled it like a champ. Every thing went well. This time he had his liver and small bowel in his chest. Instead of putting in another gore tex patch like they did the last three surgeries. They removed his rib so they can do a latisum dorsi flap.  O has three gore tex patches and a latissimus dorsi flap working as his diaphragm.We feel very hopeful and confident that this will

The recovery process was painful. O had his arm in a sling, a chest tube and a JP drain. For the first four days we couldn't hold him.This was difficult. O didn't understand why ma-mom couldn't hold him. At one point he was kicking and screaming having one of the biggest temper tantrum ever. He had every right to throw a tantrum of this nature. I did the next best thing I crawled into his hospital crib leaned over in the most numbing uncomfortable position to comfort my boy.

Easter day, six days after surgery we were going home. We were  behind happy to be getting the heck out of the hospital but a little reluctant. O had to go home with the sling which was no big deal. He also had to go home with a JP drain. Eeeeck it totally grossed me out. I am not a Nurse.I don't do well with Nurse kinda jobs like a drain coming out of my toddler's side.Needless to say it totally grossed me out. Not as much as his chest tube which was removed on day four. Thank goodness the chest tube had to be removed before being discharged.  Thankfully hubs took on the role of taking care of the JP drain.Nurse Hubs to the rescue! Two days after being home we took O to one of his amazing surgeons to have it removed  and that was that no more JP drain, you won't be missed.
JP drain

 A week later O's no longer needed his sling or any pain medications. He was back to being a curious little boy full of energy. Each time O has another set back (surgery) he amazes us how remarkable his little body heals. We are so blessed to me his ma-mom and daddy. He wouldn't be here thriving without his team of surgeons,Nurses and Doctors. Thank you for all your hard work and devotion to making a HUGE difference in our son's life and others.



Thank you for taking the time to read O's story. O's is not alone. Every year 1600 babies are born with Congital Diaphragmatic Hernia. Out of those 1600 babies only 50% will survive. My heart aches every time I hear of another baby/child loosing their fight against this awful birth defect.
4 Responses
  1. LOVE that poem! And your sweet little boy! Thanks for sharing his story here! :-)

    :-) Patty D'Angelo
    mom to Charlie, LCDH survivor, 2/4/09


  2. Darcy Says:

    Amber,
    You all are amazing! I am glad that you put your story down like this, so many people will be helped by it when they search for success stories!
    darcy


  3. Amber Says:

    thanks Darcy it only took my two and half years to finally get around do typing it all out.


  4. So glad your warrior has done so well. He is quite a cutie!

    Shelly Moore
    Grandma to CDH angel Jayden G.
    Oregon Co-Rep for CHERUBS