Saturday, July 31, 2010

Emerson is finally crawling!!!!!!!!!

After months of watching this poor baby try and try and struggle and struggle, she has finally done it!!!!!!! Emerson is crawling! I felt like this would never happen. But she isn't satisfied with just crawling; she is trying to stand up in the middle of the floor and pull herself to stand. Our goal is to have her walking by her second birthday! Fingers crossed!

Medically, Emerson has been doing well! No major complications and all her doctors appointments have gone well. In May, Emmy was put on a pureed food diet and has had far less problems with vomiting since then. We are hoping to remove her GJ tube in September and just use a G tube. She is making very little strides toward eating orally, but is starting to enjoy playing with food and loves to kiss food!

We have lots of appointments come September and are hoping for all good reports. I will try to update again soon!

Friday, January 15, 2010

A New Year

I'm so terrible at updating this thing...but the good news is that there is not a whole lot to update because Emerson is doing very well.

Since her surgery, we have followed up with all her doctors and they all agree that she is doing much better. We followed up with a neurologist, since she suffered some brain damage during one of her incidents of cardiac arrest, and they said that they see no reason to follow her because she is doing very well. They did, however, refer her to a Pediatric Opthamologist to see if they can help with her poor little crossed-eyes, hehe...

On New Years Eve, she got a GJ Tube and has been doing very well with vomiting, but still lots of retching and gagging. We are working on it though. She has also been sleeping better, WOOHOO!!!!

I'll try to update soon, she has some appointments at the end of the month, so I'll let everyone know how they turn out!!! xoxo

Friday, November 27, 2009

Happy Thanksgiving!!

I hope everyone had a wonderful Thanksgiving! We certainly did, even though we spent it at the hospital. Emerson has been doing very well recently. The doctors were able to get her chest closed on Wednesday and ever since she has been able to get rid of a lot of the extra fluids that she was hanging on to!!! She is actually looking like herself again, except for her belly, which is still very swollen.

Her heart functions have been very good, and her pressure and heart rate have been stable! Yay!!

The doctors say that when she gets rid of a bit more fluid then they can start thinking about extubating her and letting her wake up a little bit. I CANNOT WAIT FOR THIS!! I miss this baby so much!

Emmy has had no more problems with irregular heartbeats, knock on wood.....and hopefully will continue to behave herself. We'll see, the doctors have already come to find that they cannot trust this one!!! :)

Friday, November 20, 2009

It's Been A Rough Time

Emerson's heart surgery was scheduled to take place on Thursday, November 12th. After the induction of anesthesia, Emerson went into cardiac arrest and needed chest compressions for about 11 minutes. She was brought out of it, but the doctors were unable to continue with the surgery. After this incident, Emmy was brought into the Cardiac ICU, where she remained through the weekend. She did really well, and recovered very quickly. Saturday evening she was a bit awake and moving around, babbling.

Emerson went back to the operating room Monday morning at 7:30. She went under anesthesia fine this time!! Yay! The doctors were able to complete the surgery and remove Emerson from the bypass machine without any problems. The doctors closed up her chest. Once she was off the bypass machine she went into cardiac arrest again. This time it only lasted for a few minutes and she was able to be brought out of it with lots of fluid and medications. After this incident, the surgeon decided to open Emerson's chest back up to relieve her heart of pressure, due to the surgery and all the fluids. After this, she was moved back up into the Cardiac ICU. Immediately after she arrived, she went into cardiac arrest again. The doctors were able to bring her out again, then prevent her from going into a third incident of cardiac arrest.

The surgery itself was considered a success. Emerson has virtually no obstruction in her Aorta and her proximal Pulmonary Arteries were widened considerably.

I had no idea that the toughest part of this surgery for us was going to be the recovery. Emmy has had a very rocky week. We found out that she has an extra electrical charge that causes her heart beat to become dangerously fast out of nowhere. The doctors are controlling it now with medications, and she has also had to be put temporarily on a pacemaker. She has had to be given 5 liters of fluid to keep her pressures stable, and as a result, she looks like a balloon...poor baby!!

She has been give Lasix, a medication to help her body rid of the fluids, and is starting to look better. She also suffered Kidney and Liver damage, and is slowly recovering from that.

Emerson has been very stable now for the last 24 hours and we think that she is finally on the road to recovery. The doctors are hoping to close up her chest early next week. We are planning on being in the hospital for another month because her doctors are being extremely conservative with her treatment, due to her flare-ups.

Emerson is finally looking like herself again, in the face anyway, and the nurses gave her a purple bow for her hair for FINALLY being such a good !!!

Saturday, November 7, 2009

Surgery Day :(

Emerson's cardiologists have decided that the best course of treatment is open-heart surgery. Emerson will undergo this surgery on Thursday November 12th. The goal of the surgery is to remove the obstruction that is growing into her Aorta. The surgery will take 6-8 hours and hopefully she will be so much healthier afterward. I will try to keep everyone updated!

Wednesday, October 21, 2009

Going Home Soon....

So we found out that we are probably going home either tomorrow or on Friday. Although the doctors still don't know why Emerson is vomiting, they have been able to greatly reduce her symptoms by putting her on a continuous feed, 24 ounces in 24 hours. This isn't ideal, and although we don't want to take Emerson home this way, it is our only option for now. Emerson's test couldn't be coordinated until next Wednesday. We will be coming back to Cincinnati then for Emmy's cardiac cath and endoscopy. Hopefully they find some valuable information that will lead them to a diagnosis!

If the doctors are unable to find anything with these tests, then unfortunately our only option will be to give Emerson a G-J tube, which is basically a feeding tube directly into her intestines so she won't be able to vomit. The only downside is that she would have to be on a continuous feed indefinitely.

I have a lot of faith in our cardiologist and am hoping that he will do everything in his power to figure out what is wrong with my little angle!1

Who knew they made hospital gowns for babies?!?