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 !!!

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!

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

It has been quite some time since I have been on here. Emerson is currently in the hospital and I have nothing but time so I figured I would update everyone. Emerson was admitted to Cincinnati Children's Hospital last Tuesday for severe vomiting. Her cardiologist, Dr. Towbin, wanted her admitted right away to prevent dehydration, because Emerson has been vomiting for months now. Last January she had her g-tube and a nissan placed. The nissan was supposed to prevent vomiting, however, in June, Emmy finally vomited past her nissan. It has been all downhill from there. She is to the point where she is vomiting several times a day after each feeding.

We have been in the hospital for almost a week now and her doctors still don't know why she is having this problem. So far, she has had a repeat Upper GI, a chest x-ray, CT scan, an echocardiogram (luckily her heart isn't getting any worse), and numerous labs. Everything has come back normal. We've met with the GI team here, which are ranked in the top 3 in the country, and they are stumped. They have tried numerous formulas and volumes and haven't found a solution. Currently, Emerson is on a continuous feed. She seems to have the best luck with that, though she still vomits.

Tomorrow, Emerson is undergoing a 2nd Endoscopy with a 24 hour probe, an MRI, and a cardiac cath. Hopefully her doctors will be able to gather some valuable information that will lead them to the answer. I cannot watch my baby suffer any longer!!

Since I've been here, I heard about another Williams family suffering a horrific tragedy. My heart and thoughts go out to little Sophie and her family. Rest in peace, Little Angel!

Making Strides

Emerson has made accomplished some great things lately. She is starting to sit up more and more on her own, and is also starting to stand! She is so big!!

We scheduled our appointment with Dr. Towbin at Cincinnati Children's Hospital for August 20th. I am very excited and anxious. I know that if anyone can help our family, it's going to be him. I also want to say a special thank you to our OT, Holly. I love her so much for what she is doing for my family. And as much as Emerson hates her right now, lol, she will grow to love her too!

I will update and let everyone know what we find out with her appointment!

It's Been Awhile!!

I finally have a new computer, well, a donated computer, but it works so who cares. Since I've last been on here, we have had a lot going on. I just quit my job last Friday so I am able to stay home with Emerson all the time now, YAY!!!!!!! It is wonderful, I missed her so much being away at work. We have followed up wither Emerson's cardiologist and geneticist in the past couple weeks. Her genetics appointment went very well; Dr. Escobar tweaked Emerson's feeding schedule so she is not on an overnight feed anymore, yay! That is wonderful. She is up to 17 pounds 9 ounces now and is 27 inches long, so as you can see, her g-tube has been a blessing! Her cardiologist said that Emerson is not better, no worse. So we will take that as good news. We see him again in 4 months and then we will schedule to have a heart cath done! In the meantime, my husband and I are planning to take Emerson to The Cincinnati Children's Hospital to get a second opinion on her heart condition. We are going to see Dr. Towbin, who is one of the leading doctors in cardiomyopathies. Hopefully he can help us! I'll let everyone know how that turns out!

Emerson is still doing first steps and seems to be doing better all the time. She is sitting up for short periods of time on her own, and is becoming far more intersted in her toys. Today she stood up for the first time, with the help of the couch! It was amazing!

All for now, I will be on again soon! Hope everyone is well!

Big Changes

It has been so long since I have been on here, and there have been some big changes with our family. We bought a new house and moved in a few months ago, finally settled in for the most part! I started a full-time job, which is much harder than I anticipated. I miss being home with my baby girl so much, but Brandon and I are working on a better solution.

Medically, Emerson seems to be doing alright. We went back to her cardiologist in April and her Hypertrophic Cardiomyopathy is actually worse, which was devastating to hear. But her cardiologist said that it is promising that she looks and acts so great. Her hypothyroidism is completely cleared up so that is one less thing that we have to worry about. She is still in first steps, OT once a week and getting ready to be two times a week, developmental therapy once a week, and we are getting ready to start seeing a Speech Therapist and a Dietician. She is doing really well with it all. She is holding her head up completely on her own and we are working on sitting up now. She is still having some feeding issues but is working on eating actual baby food and is doing quite well. She is sleeping much better now, 8-9 hours a night and only waking up, on average, 3-4 times a night for a few minutes at a time, which is a huge improvement from where she was!

I am hoping to update more often, but am very busy these days! Hope to get on here soon!