The heart hurts...

First Eli's surgery went well. They have had some issues with trying to level out his blood pressure but everything so far has been going well. All of the machines doing the things that they are supposed to do. All of the people doing the things that they are supposed to do. I am forever thankful and in awe by the things that they can do.
With that being said, I have to admit I don't think I prepared myself to see him this time when he came back from surgery.Perhaps it is because he is older, perhaps it is because of the time that I have spent with him over the past three months. Honestly, it doesn't really matter the reason if you have kids or someone you love for that matter it sucks to see them go through something painful. Regardless of what it is. To tell you the truth I would trade with Eli in a heartbeat, I just don't think I am as strong as he is. My heart is fine and yet it hurts.
I am filled with hope now that the surgery is past. Hope for dreams that my son will have. Hope for things that we will do together. Hope for a healed heart for both him and me.

Quick Update

Time has really gotten away from us these last few months. All of our focus has been on Eli and Maggie. Eli has reached the point were it is time for his second surgery. This last month has been filled with more doctors appointments then I can count. And the last few weeks we have noticed a change in Eli. The first surgery that he had was only a temporary fix. Eventually the shunt that is in his heart reaches a point that it will no longer meet his needs. We knew this surgery was coming, however it wasn't expected this soon. These last 3 weeks Eli has shown that now is the time. It has been very difficult to see him grow more weary and require oxygen to maintain decent saturation's. We've experienced many days and nights watching him and closely monitoring him at home. We are relieved and also very anxious that the second surgery is here. The surgery is tomorrow at 7:30am and should last 4-5 hours. Please pray for our son, the doctors and nurses. We could use your prayers too. We can't describe what it is like to see your child after a surgery like this.

Our son is so strong. We are so proud to call him ours. These last few months have been hard but it is such an honor to serve our son.

Two steps forward and now one back

Eli has been doing so well at home. We have been able to adjust to life and now this. We are back in the hospital. Last night we were getting ready to head out for Friday night out with the family. As Maggie says, "I want to do something fun!". So I went to give Eli a bath and upon taking his shirt off discovered what looked like a large purple marble under his scar in his chest.  We instantly called our nurse as well as sent her pictures. She then called back and said pack a bag that we were coming back to the hospital. Sorry Maggie, no fun for us tonight. 




Once at the hospital and settled into our room they took some blood and said now we wait. And wait and sleep(some) and wait. 

Well as it turns out, Eli has an infection in his blood. They will continue to monitor him as well as give him antibiotics. They are concerned with it spreading and so are taking precautions to prevent that. Best case scenario is that his body reacts well to the medicine and a couple of days from now we go home. Worst case scenario is that they have to open him up again and clean the infection out as well as keep him here at the hospital for awhile. 
Obviously we are hoping for the best. In the meantime we continue to wait. 

Eli's Due Date...

(Ok so first I want to apologize for not updating the blog. I have heard from so many of you and really appreciate the desire to keep up with anything that is going on with Eli and us for that matter. Again all of you have been amazing with your love, encouraging words and prayers. Know that I will try harder.)

So yesterday was Eli's official due date. It seems crazy to think that he has gone through so much before the day he was actually supposed to be born. He was born 3 weeks early, had surgery 8 days later, went home 8 days later and has been doing awesome at home. It has been amazing to be at home with him. (don't get me wrong hospital food is the best, ha!)There is one thing that I do miss and that is nurses feeding and changing him in the middle of the night so mom and dad can sleep. Honestly, I forgot about that part. Ok and honestly it is Kati who is up 90% of the time in the middle of the night.

We are slowly transitioning to try and live life as normal as you can with a newborn. We have ventured out of the house a couple of times and usually meet people with questions everywhere we go. "He's so small. Why the feeding tube? How much does he weigh? He is really cute." I usually answer, "Yes he is smaller, he had open heart surgery less than two weeks ago, he is almost 6 lbs and honestly of course he is cute, look at me."

Where do we go from here? - So right now the goal is to get Eli eating more (which he is doing really well on) so he can gain weight and strength and then sometime before the end of the year he will have his second surgery.
Until then I will try and do better about updating his blog with at least pictures.

The road to recovery

So surgery went really well yesterday. The surgeon said everything went great and they were really happy with the outcome. Then the time came for us to see him and as much as they prepare you and as much as you prepare yourself you are never quite ready. All of the wires and tubes and machines still gave us a gut check.
His progress though has been really good. He had some issues initially with his blood pressure but has done well. They have told us that everyday there will be a goal towards chipping away to the ultimate goal of going home. The goal for today is to start weening him off of the breathing machine. He has done great so far. So we continue to wait and chip and cheer at small victories.
Again we are overwhelmed by the love and support that we have gotten from family and friends. You guys are the best and we love you all.

The feeling of helplessness

This morning at 6 I woke up and went to the bathroom in our hospital room. Afterwards I went to check on Eli who was sleeping peacefully in his little bed. I stood there for a minute debating wether to disturb him from his contentment just so I can hold him in the quiet morning. I finally decided that I would sleep until 8 and then get up and still have dad and son time before his surgery.
At 7:40 Kati and I were abruptly woken up by Eli's nurse saying everything was fine but they were moving up Eli's surgery to 8. Sorry buddy no time for us now. We will have to reschedule. 
As Kati and I franticly run around the room trying to get dressed and spend the few minutes that we have with Eli it starts to settle in.
Before Eli was born I struggled with connecting with him. When Kati was pregnant with Maggie I would talk to her belly, sing to her, pray for her and so on. With Eli I barely did any of that. I talked to a close friend about it who understood. He had told me that it is a natural feeling to guard myself from connecting and loving because of wanting to avoid any pain it may bring in the future but at some point I will be so overwhelmed with love for him that I won't be able to deny Eli of it. Man he was right. From the moment that I saw him I have been like that proud dad dreaming about baseball games together, learning how to surf and teaching him how to snowboard (or him teaching his old man) and of course teaching him the ways of a musician. 
Ever since he was born I have been in a state of something. Several have said it was faith, I seem to believe it is denial. He has looked so perfect and done so well. There is a bible verse that says, "man looks at the outward appearance but God looks at the heart." I had fallen for it. I looked at the outside and have believed he was perfect but inside he was broken. And so am I.
Reality hit me this morning. As they wheeled him away and Kati and I stood there I had this sense of helplessness. Not the helplessness that you feel when passing a homeless person on the street but the helplessness that you feel when you have held and touched and kissed someone and then have to let them go. My sense of hope is that he is in amazing and capable hands. His surgeons, doctors and nurses have been amazing with Kati and I and so we are grateful for that.
In the meantime we wait and pray and pace and pray that all goes well and that one day Eli and I will be hitting the slopes together. 

Surgery

For those who just want the basics - surgery is scheduled for tomorrow at noon. It should take about 3 hours. It will be performed by a real surgeon and not the one in this picture.