Nathan's Story

I am going to start Nathan's story from where it all began. We tried for a little over a year to get pregnant. When we found out I was finally pregnant we were so excited. Nathan is my 3rd child. Ally is the oldest and then Hunter and Nathan. Although he is my 3rd he is my husband's 1st. To say he was excited would be an understatement. Things progressed very smoothly through the pregnancy. I had no complications. We found out he was a boy when I was 18 weeks and at that point everything was still ok. I went for my 4D ultrasound when I was 32 weeks pregnant and the tech just kept going back to his heart. At the time I didn't think anything of it but that afternoon my ob called and said he wanted me to go to a maternal fetal specialist to get a more detailed view of Nathan's heart because the tech couldn't see all 4 chambers. He told me he just felt like it was the way the baby was laying but he wanted to be sure. That was the scariest week of my life but I didn't want to believe anything was wrong. So it's time for the ultrasound appt. and I am a little nervous but still not worried. We are in the room and the tech once again kept looking at the heart. She said let me go see if the doctor wants to look so stay here. OK! She came back in and said I am going to move you across the hall to the better machine. Yep that was it. I knew something wasn't right. Hypoplastic Left Heart, 50% survival, and 3 open heart surgeries was all I remembering hearing that day. The flood of emotions began. At this point we decided to do an Amnio to see if there was a chromosome disorder causing the heart deffect. More scarey wating for test results and YEAH no chromosome disorder. Nathan was going to be fighting a bigger fight than any of us can imagine and it was awesome to know that nothing else was fighting against him. Induction day comes and 7 hours later there he is, the cutest bravest little boy I have ever layed eyes on.

AND THE FIGHT BEGINS! Nathan had a very uneventful stay in the NICU for 4 days while we waited on surgery. We were so hoping that was a good sign.

Monday morning came and we get to hold him for a while then they came.  I have to watch as a team of people roll my baby down a long hall that I was not allowed to go down so they could cut his chest open and begin repairing his broken heart. Nathan came through surgery with no problems. I am going to warn you before you see the next picture it's graphic

When he was all settled in they came and got us to come see him. Wow I can say I have seen Nathan's heart beating in his chest. A window into my new world. The 24-48 hour critical window begins and they always say they get sicker before they get better. As we are standing there rubbing and loving on him his heart stops beating. Here comes a flood of people. Fortunatly they were able to get him back within 10 minutes and the surgeon was called. That night they went back in Nathan's chest and seperated his chest wall a little more as soon has they removed some of the pressure he stabalized. Now that the most dramatic part of our story is over let me kind of make the rest as quick as I can. Recovery seemed to be moving right along, chest was closed after 7 days, shortly after that chest tubes starting coming out and then he was extubated. Things were moving right along and then chest tube back in. Fluid was gushing from the right chest tube like crazy so here we go another surgery. Thorasic Duct Ligation/Plueredesis. Chest tube finally out no more drainage and extubated again. In the middle of all of that, he developed an Echoli bacteria infection and a level 3 brain bleed. Good news is brain bleed is resolving itself. Yeah we are making progress then 5 days later re-inutbated. Gave out over night and so back on the vent he goes. At this point the doctors think it is slient reflux so another surgery. Nissen/G-tube, now we are finally getting to eat and grow so hopefully we don't give out again. There was talk for a while about extubating and Nathan got tired of hearing it so he extubated himself. We made it 5 days again and back on the vent we go. Now it is time for a heart cath to make sure nothing is going on that is preventing him from being able to breathe on his own. Back down that hall he goes. There was nothing wrong with Nathan's heart that should be causing these problems. They decide we would try one more time to extubate then go from there. The doctors were able to get him to really low setting but he never could pass the trial that lets him breathe on his own before they extubate so the decide to do a Bronchal scope. Now we finally have an answer. He has bronchal malasia where some of the tissues in his lungs are mushy and they collapse when he breathes so there is no point in extubating. Putting in a trach in now our best option so down that hallway he goes again. Once again he is a champ. He is so happy now because he doesn't have all that stuff in his mouth and on his face. Finally 3 monts later we are finally working on going home. Think again. Now the left chest needs a chest tube. That brings me up to date with where I will start blogging. So here we are 3 months, 4 surgeries, heart cath, and now another procedure in the near future. God has huge plans for Nathan and all his little heart buddies.

My Hero!