A Thank You

I want to use this post to send a thank you to some very special people that I haven't gotten a chance to thank. While teaching at McPherson High School, I got the opportunity to work with some very amazing kids and parents. They all have impacted my life in ways I can't put into words. While I could go on and on about that, this post is dedicated to one very specific act of kindness. Last semester, I had the opportunity to teach a senior speech class. This group of kids decided to take on a project. They kept this project a secret from me. With no outside help, they organized a fundraiser. They had t-shirts made by a local company, worked out a deal with that company to donate some of the profit, and sold t-shirts to nearly every student at MHS. The t-shirts, black and pink, had on the back "Emaline" and the number "01" in the design of a basketball jersey. The pink shirts had the word "LOVE" on the front, while the black ones said "Ball So Hard." Again, this was all kept secret from me. This entire project was the result of some amazing and caring kids. They have no idea just how much I was touched by this.

On Monday, each member of our family wore one of the t-shirts designed by these kids. We got a lot of compliments on our shirts as we walked around the Ronald McDonald House and Children's Mercy Hospital, but my favorite part was telling everyone the story of how these shirts were created. You can't hear  a story like this and not feel good. Any time you start to question humanity or the coming generation, be reassured there are amazing kids that will continue to do good in the lives of others. To these kids, I want to say thank you from the bottom of my heart, and I miss each and every one of you so much.

I also want to thank everyone that has sent kind words, donated time, food, money, prayers, and everything else of the course this very special girl's life. We can't say thank you enough and we appreciate everything!

Out of surgery! She's doing great!

Ema is out of surgery and recovering in the picu. Everything went well. She's a bit sore now that she is coming out of sedation. Her little arms had to be restrained because she was pulling on her tubes and lines. All in all, she is doing great!

Change of Plans. Again.

The surgeon just came and talked with us. There has been a slight change in plans. Because of some calcification in the graft material from her last operation, and due to a lack of space between her heart and sternum, they will not be able to do the double ventricle repair as planned. Instead, they will do what's called a Glenn Procedure. This is the second of three steps in a single ventricle repair. That means a few things. Today will be shorter than originally intended, by about three hours. It also means she will for sure have to heave at least one more major surgery in the next three years. This isn't the news we wanted, but the surgeon explain it is the safest option. If they were to continue with the double ventricle repair today, it would likely require up to five more surgeries as Ema grows. The surgeon, who co-wrote a paper on this exact thing, explained that each of those surgeries because increasingly more dangerous. Big brother Grahm was very concerned when the surgeon came in, and asked where Ema was. Ema is in very capable and experienced hands in this hospital, both physically and spiritually.

Surgery Day

We just sent Ema away with the surgical nurses and we are waiting in the surgery waiting room. Today is the big day we've been waiting for. Surgeons will be fixing every remaining problem with Ema's heart. Hers is the only surgery scheduled for this surgeon today because it is expected to last all day (we were told to expect at least four to six hours). Ema was in good spirit this morning. She was a bit cranky from being up so early, and she didn't want anyone touching her, but she was smiling and waving hello to everyone in the hallway. She also had to poke her head out of the exam room door to wave at the people walking by. I will continue to post updates here as the day goes on, assuming I'm able to. Friends and family, feel free to contact me on my cell phone.

We're coming home!

A lot has happened since the last update. Ema has been doing very well, but she still has some trouble swallowing. This is something we expected with the DiGeorge Syndrome. In order for her to get nutrition, she has what is called a G-tube (gastronomy tube). This is a tube surgically inserted into her stomach with a nozzle on the surface of her skin. It's painless and doesn't seem to bother her at all.

Right now, Becky and I are in Kansas City getting trained on all of the new equipment we will be bringing home with us. Ema will require a feeding pump that will administer food through her G-tube. Though she is breathing room air, we will have oxygen tanks handy in case her oxygen saturation drops too low. She will also require a number of medications that will need administered throughout the day.

In spite of all this, she is a wonderfully normal baby girl. We just put a tube in her belly when she needs burped instead of patting her on the back. We are all ready for her to be home, including Grahm, who says, "Ema," every time we ask him what his sister's name is.

She has given us quite a few ornery grins while we've been up here. She knows she's about to go home.

She's doing so well.

Ema is doing exceedingly well! She is now in her own room, which means we can stay with her every minute of the day. We can also have as many visitors as we'd like. At this point, she is not on any IVs. She is hooked up to the standard monitors, but I haven't heard them alarm in days. These are all very good signs that she is a healthy baby. The next step is to get her breast feeding. She still has an NG tube (a feeding tube through her nose). She is well ahead of schedule for recovery. It looks like we'll have her home in a week or two. Thanks for all of the prayers and support!

The surgery went well.

I missed it because I came down with the flu (just my luck).

Here's Becky's update:

Emaline had her first cardiac surgery today, the Norwood procedure that we described in earlier posts. The day started off slowly. I got to the ICN at 6:45am and Ema was awake, so I picked her up and rocked with her for awhile. She was in a pretty bad mood because she hadn't had anything to eat since midnight (for Ema a bad mood just meant that she would periodically cry, which normally she hardly ever does).  Several members of the surgical team came and talked with me during the next few hours, but it wasn't until about 8:45am that they had me put her back in her bed so they could transport her to the operating room. They let me walk with her down to the OR doors, where I kissed her goodbye and another nurse took me to the surgical waiting room. Leaving her there in the hallway I wondered whether I would ever see her again.

 The procedure took several hours, and every hour a nurse would come and update us on her progress. From the very beginning they seemed to be almost surprised at how well Ema was doing. They came and told us as she was put under, had IVs added and medication started, when the surgeon began the operation, as he added the shunt and sewed all of her new connections, and as she was preparing to go off of the bypass machine that had been her heart during the surgery, they warned us that it might take several tries before her heart would be able to work by itself. However, just a short time later they came back to tell us that she had been able to come off the bypass the first time without any problems.

The nurse then took us the PICU waiting area while they finished up and got her settled into her new room. Some time later, I was able to go back and see her. Because her heart may swell and there may be a buildup of fluid at her incision site, the doctors still have not closed her incision, but have it covered with a dressing and have a tube coming out of it to drain the fluid. They are very optimistic about how it is looking, because she isn't draining very much and has had such a strong heartbeat. They are telling us she may be able to be closed up fully as early as tomorrow or Saturday. She is still on a respirator and coming off of that will be the next step after she is closed. During all of this, she will remain asleep. I think that is the scariest part, because she looks so still and death-like. Even so, I can see her heartbeat beneath the bandage on her chest and it is comforting to know that her heart is stronger than it was just this morning.

She is very pale and blue-tinged (cyanotic) and she will remain this way until her third and final surgery that will completely separate her oxygenated and non-oxygenated blood. Again, this is slightly scary to see, but we just have to remember that this is normal for babies that have been through what Ema has been through.

When I woke up this morning it felt like the waiting was over, but I guess it has really only begun. We have crossed the first step and Ema has done so well, I know that is an answer to prayer! However it feels like we have many, many steps to go before Ema is safe.