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

Monday, October 19, 2009

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!

Tuesday, August 4, 2009

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!

Tuesday, July 28, 2009

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!

Tuesday, June 2, 2009

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!

Wednesday, March 25, 2009

We got some good news the other day....Emerson's final genetic test came back to reveal that her Hypertrophic Cardiomyopathy is not a primary heart condition and is more than likely caused by her Williams Syndrome. This is good news because most of the WS children tend to outgrow their heart problems. YAY!!! So excited about that.

She is getting back into her old routine of only sleeping 3-4 hours at nights, so that's been fun. She wakes up several times coughing and gagging, most likely from her reflux. Her Occupational Therapist, Holly, is going with us to our next appointment with Dr. Escobar, her geneticist, to suggest some tests that she feel could help eliminate some ideas about what is keeping Emerson up at night. We will hopefully get a sleep study to make sure that she isn't having any apnea, or worse, any seizures. We are also going to talk to her doctor about putting Emmy on melatonin, so she can sleep at night...mommy is a bit worn out! Also, I can see such a big improvement in her when she sleeps!

Nothing else really going on...Emerson is continuing with her First Steps. She absolutely hates it, but we are seeing strides!

Thursday, March 19, 2009

Another Day In The Life....

So Emerson is on week 2 of her First Steps therapy and doing pretty well I think. We have been working a lot on trying to get her neck strong so she can hold her own head...soon we hope. We've also been working on some exercises with her mouth to strengthen her muscles so she can eat better. She is trying to roll on her side now, so hopefully in the next couple of months she will be able to roll over all the way...(fingers crossed)!

We also followed up with Emerson's surgeon..he placed her g-tube. He said that she healed very well and has gained weight nicely, which is the goal. He also cleared her for tummy time, yay, so I think that will help with her development as well.

Nothing else too exciting with her right now....although, we believe she might have started teething...yikes! She has been much crankier than usual and has the beginnings of two little teeth on her bottom gums! So big!

We also close on our new house tomorrow...exciting! Can't wait to make some memories with the girls there!

Tuesday, March 10, 2009

First Steps

My husband and I went to see my brother-in-law in his high school musical last week. He was the main character and was absolutely amazing. To stay on topic, my husband's cousin was there with her 5 month old son, who was born 2 weeks before Emerson. It literally brought tears to my eyes to see how much more advanced he was developmentally than Emmy. He was sitting up, holding his own head up, reaching for things, and laughing. Emerson does not do any of that. I could not help but be sad for Emerson, and us as parents.

This all being said, Emerson starts first steps tomorrow. She meets with an occupational therapist and will meet with a developmental therapist next week. I am very excited for her. I think it will be very good for her, and for me to learn how to work with her and help her grow and become stronger. I know changes won't happen overnight, but I believe with a lot of hard work and a positive attitude, she will succeed. I will post later and let everyone know how she does.

We are also following up with the surgeon who did Emerson's G-tube and nissen on Thursday. He will show me how to change her feeding tube (terrifying) and what to do if it gets pulled out. I am also excited because for the past 6 weeks (her healing period) she hasn't been able to have tummy time. I hope that the re-introduction of this into her routine will help her neck become stronger and hopefully be able to hold her head up on her own in a few months. Wish us luck!

Wednesday, March 4, 2009

I've decided to start this blog in an effort to keep people updated on our angel Emerson, and also as my own personal outlet. Emerson was admitted to Peyton Manning's Childrens Hospital on January 21, 2009, which happened to be my step-daughter's 6th birthday, via the emergency room, after an echocardiogram revealed an abnormality with her heart. When we got there we learned that Emerson was suffering from a heart problem called Hypertrophic Cardiomyopathy, which basically means that her heart muscles are very thick. At the time of her admittance, Emerson was 3 months old. At birth, she had an echo because of a heart murmur. We were told that it should go away within 6 months. At that time she had no signs of HCM. In 3 months it had advanced from non-existent to very severe. My husband and I were in shock. We absolutely did not expect to hear that. We knew that there was something wrong with her. She had had terrible feeding and sleep issues since birth.

After what felt like a marathon pumbling, and more bad news than we could have ever imagined, we finally met with a geneticist who explained to us that her heart problems, which also consisted of pulmonary and aortic stenosis, were characteristic if certain genetic conditions that they wanted to test for....amoung them, Williams Syndrome.

At first, I didn't really believe that her problem could be a result of a genetic syndrome. After my husband and I did some research on WS, we both agreed that Emerson really fit the profile, especially with her colic, feeding and sleeping issues, and heart problems. After almost 2 weeks in the hospital, so many tests, and surgery to have a gastric feeding tube and nissen (to prevent acid reflux), we finally got to go home. A few weeks later, we got the call telling us that Emerson tested positive for Williams Syndrome. By this point, my husband and I had plenty of time to get used to the idea so we weren't really shocked by the news, more glad that she had a diagnosis.

This has been a few weeks ago and we are all still trying to adjust to everything. It is much more difficult than I imagined, but I know that our daughter is strong and can overcome anything. Her heart condition is extremely rare in infants and is in a very severe stage. It is all up to her body to heal itself now, so we are keeping our fingers crossed and hoping our angel will pull through so we get to meet the wonderful person that she is destined to become.

In the past weeks and the weeks to come, we have had many appointments with many different doctors. We followed up with our cardiologist, who said that Emerson's heart hadn't gotten any worse since she left the hospital, which was very good news. He also said that if her heart condition is a direct result from WS, then she had a better shot at recovering from it. We are still waiting on the test to determine if it is from the WS or not. We've seen her primary pediatrician several times, a gastroenterologist, genetecist, and are getting ready to follow up with her surgeon and endocrinologist. Wish us luck, and I will continue to keep everyone updated on how Emmy is doing!!

Who knew they made hospital gowns for babies?!?