Saturday, May 30, 2009

Another Open-Heart Surgery

NOT for Whitney... this time it is for my Mom!

This has all come about pretty suddenly. About 6 weeks ago (I think) my Mom went to Chicago to see a cardiologist who specializes in women's heart health. My sister, Melissa, is a dietician at Rush Hospital (in Chicago) and after my mom had some bloodwork done recently that showed elevated cholesterol levels + elevated CRP levels (my mom had this checked at Melissa's urging) Melissa kept after her to come to Chicago to have a heart evaluation done. My grandfather had a heart attack and I think this might have been in the back of my mom's head when Melissa kept after her to come get a workup at Rush with the cardiologist... finally my Mom agreed to come up and see the cardiologist and THANK GOD she did! The cardiologist heard a heart murmur when listening to my Mom's heart and then had a heart echo ordered to look more into the heart murmur. It turned out that her aortic valve had thickened which narrowed the opening (aortic valve stenosis).

Bottom line, after going to the doctor in Chicago 2X, my parents realized they would need to find a doctor closer to home and they have been to see a cardiologist here (Indianapolis), had a cardiac cath procedure done and her cath came back "clean", but she has severe aortic stenosis secondary to either 1) a congenital defect or 2) calcification possibly resulting from HRT (hormone replacement therapy) as she had to have a hysterectomy in 1983 soon after having my youngest sister (she was 32 years old). Mary Alice (my Mom) was on HRT until 2005 - and all sorts of research is finding women on prolonged HRT have increased risk of calcified heart tissue. She needs to have ~ 2" of her aorta replaced (in addition to her aortic valve) b/c the pressure from the aortic valve stenosis has led to an ascending aortic aneurysm (the pressure of the blood coming through the valve has essentially eroded away part of her aorta). To top it all off, after her cath procedure (performed on the Wednesday before Memorial Day weekend) identifying she needed the surgery asap, she was admitted to the ER/hospital the morning after the procedure (Thursday) with left-sided chest pain (before she was asymptomatic) - turns out she developed a pneumonia 12 hours after her cath???? the CT scan revealed a "left lung opacity consistent with pneumonia, but differential dx of carcinoma cannot be ruled out" - what the heck? how could she have gotten a pneumonia w/o a cough, feeling sick, fever, etc???!!! (we pray it is not a carcinoma!!!) This past Thursday she went to see a pulmonologist b/c if her condition did not improve, they were concerned for problems extubating her after her surgery... This appt. went well, so the surgery is going as scheduled, this coming Tuesday, June 2nd. The trip to the ER the day following her cath procedure was a blessing in disguise because they had to do a CT scan to check more into her chest pains and that is when they found that not only did she need to have her aortic valve replaced, but also that she has an ascending aortic aneurisym. This is craziness... but hopefully all of this craziness is one huge blessing in disguise and her surgery will go as well as Whitney's and we will have her for MANY MORE HEALTHY YEARS!!!

Please say some prayers for my mom (Mary Alice Greives) if you can on Tuesday morning.

Friday, May 15, 2009

I'm not a saint, just a parent

I read this article today (I found it posted on Brennan's Beginnings blog) and REALLY liked it! It is an article by the "chief sports writer" for The Times in the UK about life with his son Eddie, who has Down syndrome. If you have a minute, you might read it - he has a really good perspective about being a parent! Here is the link to the article: I'm not a saint, just a parent.

Thursday, May 14, 2009

not quite julie andrews

I LOVE the movie The Sound of Music. Lucky for me, Anne is really starting to love it too! Mike is opposed to musicals, but I do not think he minds this one so much. I love on the DVD how you can choose "songs only" and "play all" and it plays every scene from the movie with singing. This is a much more toddler-friendly way to watch this movie. Anne loves to sing - and recently, in addition to the IU fight song, she sings Do-Re-Mi quite often. She was singing it at dinner tonight and we thought it would be fun to share it on the blog :)
video

It was also Anne's last day of school - I can't believe she has completed her first year of pre-school! Here are a couple of pics from her last day of school (thank you Mrs. Pugh for making this such a special and memorable first year of school for Anne!!!) + I also took a few pictures after recording Anne singing - here they are...

Tuesday, May 12, 2009

Congratulations Uncle Dr. Tim

We spent our weekend in Bloomington, IN (Indiana University) with my family. My brother, Tim, graduated this weekend with his PhD in Ecology and Evolutionary Biology. Our whole family is so proud of him, Congratulations Tim!!! We had Anne calling him "Uncle Dr. Tim" :) We drove down on Friday evening in time to have a little Mother Bear's Pizza (those who went to IU will appreciate this) and then Saturday was a beautiful day. Jill (Tim's wife) and I took Anne and Whitney to Cascades Park to play in the morning then we just hung out at Tim & Jill's house until it was time to go to the graduation commencement. We had a fun family dinner after, including our cousin Jacqui (thanks for making the trip Jacqui!!!) then went for a walk! It was so nice to have the feeling that there was nothing we "had to do" or anywhere we "had to be" all weekend, except for the graduation ceremony. On Sunday I went for a short run (first time since the mini... I was a little sore after) then we spent the afternoon eating lunch on Kirkwood St. and walking around campus! It was a very nice Mother's Day! I hope everyone had a good Mother's Day Weekend. Here are some pictures from the weekend...

Wednesday, May 6, 2009

good news from the pulmonologist

We went to see Whitney's pulmonologist yesterday for our regular 3 month check-up, but more importantly as a follow-up to our cardiologist appt. last week regarding the change in her breathing and the change in the look of her chest. It was a very good visit and we received good news- from her neck down (heart and lungs) all sounds good and appears to be in working order!!! He thinks there is some sort of upper-respiratory issue going on that is contributing to the labored breathing and change in the appearance of Whitney's chest. Her tonsils are enlarged and based on the sounds of her breathing (in addition to the tracheomalacia and laryngomalacia) he believes her adenoids are also enlarged. She is much too young to consider any sort of operation regarding tonsils and adenoids, but he thinks starting nasonex nasal spray once a day will help with her breathing and will hopefully alleviate any "laboring" or difficulty she is having. I told him about our visit to the Indiana School for the Deaf (almost 3 weeks ago) and how they informed me that she has fluid (the pulmonologist thinks it is probably more of a mucus consistency) behind both ear drums. He said this goes along with what he thinks is going on - and that is that her change in breathing is due to some sort of upper -respiratory issue and that we do not have anything to worry too much about as this relates to her heart and lungs, phew!!!!

I will try to elaborate more on our visit to the ISD (Indiana School for the Deaf) in a later post, but a brief summary of our visit 3 weeks ago confirmed that Whitney has fluid behind both ear drums and has mild hearing loss in both ears (according to the test results from the non-sedated ABR - auditory brain response- tests performed by the audiologists and the ISD).

We are VERY happy about the visit to the pulmonologist yesterday... it is such a relief to hear that nasonex once/day will hopefully help alleviate any labored breathing Whitney is experiencing and that we should not worry too much about anything going on with her lungs and/or heart - it seems to be all upper-respiratory related, yeah!!!

Here are some cute pictures, just because :)

Whitney working on her rolling skills:





Anne wearing the PolyFlinders dress my mom saved from Easter when I was 2 1/2 yrs old:


Sunday, May 3, 2009

I can barely walk today

Yesterday was the Indianapolis mini-marathon. It is a fun event that kicks off the month of May in Indianapolis - culminating with the Indianapolis 500 race on the Sunday of Memorial Day weekend. This was my 9th Indy mini race (although in 2006 and 2008 I opted for the 5K race since I was pregnant with Anne ('06) and Whitney ('08). Mike has run the mini with me a few times, but this year he decided the 5K was for him. I was waivering between the 5K and the mini because I have not been running regularly AT ALL - and before yesterday, I had not run in 2 weeks!!! I decided to just give it a try and see how it would go. I was feeling great until between mile 9 and 10... that is when my legs started to give out and they had to be wondering, "What the heck are you doing to me???!!!" I made it through and ran the entire way. It was my slowest time for the race, but given my lack of training I wasn't too upset - I am just happy I made it (running the whole time) :)

On Thursday we had an appointment with a pediatric opthalmologist for Whitney. This was our BEST doctor appointment yet - the doctor was very happy with Whitney's eyes and she even told me, if she could read the chart she would be 20/20! YEAH!!! We do not go back to the opthalmologist until October... it is nice to have a great doctor, but even better that we do not have to see her very often :)

It was especially nice to have a good doctor appt on Thursday because on Monday we had to make an unexpected visit to the cardiologist. When Whitney woke up on Sunday morning (a week ago) I went to take off her pajamas and change her and my jaw dropped when I saw her chest. It went from looking like "Whitney's chest" which meant her chest was somewhat bowed out to looking concave and not at all "normal" for Whitney!!! I did not take her to the emergency room and tried not to panic because she was still all smiles, eating normally, and acting fine, but something was definitely not quite right. I called and talked to the heart surgeon's nurse practitioner first thing Monday morning and she was able to hear Whitney cough (she has had a cough for about a month that is just not going away) + from what I was telling her about her chest, she said we need to get in to see either the cardiologist or pulmonologist to be seen right away. So - we were able to see the cardiologist on Monday. He examined her and did a heart echo and reassured me that everything appeared to be alright with her heart, but he did say that the "retracting" of her chest when she inhales and the appearance of her chest is related to a change in her breathing. He said for whatever reason, she is laboring more to breathe and that is why her chest is retracting when she inhales. He advised me that we definitely need to see the pulmonologist to find out what is going on with her breathing. I explained that we already have our 3 month check up set up with the pulmonologist for this coming Tuesday (May 5th). He said he thought we could wait until then for Whitney to be seen and that he would send over his notes from Monday's exam to the pulmonologist. So... hopefully we will have a good appt and get to the bottom of this new, labored breathing on Tuesday!

Hope everyone had a good weekend!!! Here is a funny picture of Whitney wearing Anne's sunglasses after her eye dr. appt. The doctor said she has paper/disposable glasses for kids to wear after their eyes are dilated but that at Whitney's age she would most likely eat them - so if I had any kid glasses in the car, to just have her wear those... here is Whitney in her diva sunglasses :) (it cracked me up all afternoon to look at her in her sunglasses)