Those pre-surgery meetings are difficult. It’s so scary to go over the risks with the surgeon and anesthesiologists and then sign the various consent forms to allow them to go through with it anyway (or in my case, watching Carrie sign them due to the fact that I’m superstitious and don’t want to change our luck).
I got to the hospital a little before 11 and hung out with Gracie and Carrie before surgery – The “case” before ours didn’t go as smoothly as they anticipated so our 12:30 meeting with the surgeon ended up to be around 4 instead. Carrie made sure the doctor had a bite to eat and was rested before it was Gracie’s turn – I think she may have even offered him a neck massage. He assured us that he was ready -- Around 4:30 we helplessly watched as they wheeled her away for surgery. A few hours of leg shaking and pacing later, one of the doctors came into the room in her surgical attire and said that the shunt replacement went very well and that she was off bypass. We were so relieved and could finally exhale. About an hour after that, the same doctor came back in with a concerned look on her face. We were under the impression that since her last visit, they were working on cleaning and sewing her back up – As it turns out, her sats started to drastically lower with the new, larger (4mm) shunt, so they were forced to put her back on bypass and put in an even larger (5 mm) shunt. It sure would have been nice for them to tell us that this was happening! She also, at that point, informed us that if this larger shunt did not work, that they had done everything medically they could do and that we would need to consider life support, etc. I can’t say that I’ve ever been hit harder in my life than when I heard those words. We sat quietly together in shock for awhile hoping that her numbers went in the right direction and waited to see Gracie again. Thankfully, a little after 9 PM we got word that they were wheeling her back into the room soon – The nurse assigned to Gracie at that time, although a decade into her career, had recently moved from Texas to Minneapolis and was newer to this intense environment – so we listened as a more experienced nurse yelled across the floor about how it was up to her, but she may want to make “the parents” leave the room and go to the family lounge because the transition back to her room may be “too intense for them”. So we reluctantly walked down the hall and waited for some news. We alternated between sitting and pacing, eventually, the surgeon came in and talked to us about the procedure. You could see, in his eyes, how long his day had been – It was the second time that he saved Gracie’s life. We are very thankful to have had such an accomplished, capable surgeon working on Gracie’s heart. Eventually we were told that we could see her, so we made our way back to the room to see Gracie. It’s very hard to see your child completely limp on a respirator, hooked up to dozens of machines with blood flowing out of the drain tubes coming from her chest. I spent some time at her bedside. Once we confirmed that she was as stable as she could be given the situation, I made my way to the floor below to try to get some sleep because I had to go to work the next morning. Carrie stayed all night by her side. Every day since, Carrie has been there and Gracie has gotten a little better. The hospital life is taking its toll on all of us, but we are very thankful and know that things could be much worse. All evidence points to being able to bring her home in the not too distant future.
In the days following her surgery, Carrie worked with the folks at the hospital to get Gracie’s most recent Echoes and Cath put onto CD’s and sent to the infamous Dr Del Nido and his team at the Children’s hospital in Boston. We’ve been told if anybody could fix Gracie, it would be him. A few days later, as I was getting ready to go to work, Carrie slammed open the door of our room at the Ronald McDonald House carrying her laptop and said – READ THIS!!!! It was an email from a doctor in Boston saying that they had met as a team and gone over Gracie’s CDs and think they have come up with a plan to fix her. You know that feeling I referred to above when they mentioned life support – this feeling was the exact opposite – this was what we’ve been hoping and searching and praying for since we found out very early in the pregnancy that Gracie’s’ heart was so messed up. As appreciative and grateful as we are to those at Children’s MPLS for getting us to this point, they have not yet been able to give us a long term solution to fix Gracie’s heart. Their goal was to get her home, and they did – It was up to us to figure out our next steps because the path we’ve started would only give her a few years at best. I know that our surgeon here is skeptical of our choice to go to Boston, but Dr Del Nido has fixed some kids with very serious heart issues like Gracie as well as with Down syndrome. We have no choice but to get her there and hope and pray that they can fix her. Our friend Max just saw his doctor yesterday in Fargo – he too was fixed by Dr Del Nido’s team around the beginning of this year – His doctor told him that he can now be treated just like a normal little boy because his heart looks great! We hope and pray that someday soon we can say the same about Gracie. To think at one point, they gave us a less than 3% chance that Gracie would even be born and today I sit here waiting for the call to figure out the details of when we’ll be going to Boston to have her fixed - tears come to my eyes as I type just thinking about it. I know we have a long way to go, but I just know that this little girl is destined for great things. We have so many people to thank that have gotten us to this point, but I ask that you keep that positive energy coming a little longer as we make our way to Boston!
As many of you know, I have vowed to lose a bunch of weight this year. It has never been more important to me to make myself healthy – How can I watch my daughter literally fighting for her life because she was given a messed up heart while I live a lifestyle that ruins my perfectly healthy one? That said, I don’t know how I’ll pull it off, but for both of my daughter’s and my wife and to prove to my girls that things that appear impossible, with determination are possible, along with my good friend Dave Schroeder, I have signed up and plan to run the full Twin Cities Marathon this October.