Our family's journey through life

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.
 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.