God alone is Sovereign

1 Chronicles 29:11

Yours, O LORD, is the greatness and the power and the glory and the victory and the majesty, for all that is in the heavens and in the earth is yours. Yours is the kingdom, O LORD, and you are exalted as head above all.

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Saturday, February 26, 2011

Don't Play With Them

I just had to tell my 4 year old son "Do not play with the neighbor children". I hated saying the words. I never thought I would ever utter such words to my children. I know that my 4 year old does not really understand WHY he can not play with them... they are outside having a great time and he is outside and they WANT him to play with them and he WANTS to play with them. Ugh..... it is hard. It is so hard and the GUILT I feel - justified or not - is very hard to deal with. It is hard, it is hard.... did I say that it was hard???? I'm probably making too big a deal about this, but I am ready for this quarantine to be over.

I really would like to just fast forward to spring... past cold / flu / RSV season and into stomach virus season. Not that I'm wanting to catch the stomach virus, but at least we can come out of quarantine... and I am willing to brave catching the stomach virus to be just a little bit more "normal" again.

Just a few more weeks..... echo on March 8 and then most likely the sedated echo in April and THEN perhaps the JOYOUS release from quarantine. I am ready. I know my 4 year old is ready and I'm sure his imaginary friend Garnino (yes, that is his imaginary friend's name) is ready for a break!!!

So this is my vent for the day..... a little glimpse into the mind of a Heart Mom. OK, I'm done now.

Friday, February 25, 2011

Living with a Fever

So, two days ago I stopped checking Anna Grace's temp evey two hours. I have 7 days of rectal temps taken every two hours and I know that she reads normal after naps and waking in the morning and that her core body temp rises after playing to 99.9 - 100.2. Once she sits down and rests for 30 minutes it goes down again. I am comfortable not following up with blood tests because I really do not think there is any infection there. I think this is just how she is.

Her regular pediatrician will be back on Tuesday and I will call him and talk with him in length about it when he returns. But, I am not putting her through extensive blooed draws at the hospital for this. I feel like if there is an infection there that her temp will start to spike more consistently and she will develop some other symptom. So... I am just accepting this as how she is and moving on. No more obsessive temp taking.

We have scheduled an appointment with her cardiologist on March 8 and he said if she is cooperating we will try for an echo that day, but that if she is upset at all we'll just proceed with the sedated echo which will be sometime in April. Please begin praying for Anna Grace now that we would be able to get an echo on her on March 8.

Yesterday - we took a much needed day out of the house and went to Mee-mee and Grandpop's lakehouse for the day. The kids LOVED it - they played in the sand pile most of the day. They were DIRTY and HAPPY - what a blessing of a day! We were all very tired when we got home last night. It was a great day! Thank you Mee-mee and Grandpop :)

Tuesday, February 22, 2011

The Update

So I haven't posted in the last few days because I haven't known what to post. Anna Grace has still been running fevers, not high... the highest they've been are 100.6 but still fluctuating throughout the day between 98.6 and 100.6. I have about 5 days worth of temps on her - taken about 2 hours apart. I spoke to her cardiologist today and I have a call into her pediatrician. However, her regular ped is gone for the next week so I am actually going to be working with another doctor within the practice while our regular ped is out.

Basically, during my temparature taking oaver the last 4 or 5 days I have noticed a trend. She reads normal temps when she wakes up in the morning and wakes up from naps. She reads higher after she's been up and playing. Now playing for Anna Grace is not strenuous, not by any means, just regular baby playing - but her temps read higher after playing.

I mentioned this to her cardiologist today who said that there are no studies on these Hypoplastic children to know if regular playing would cause core temp to rise but that it is entirely possible. He said based on what I was telling him he didn't think there was a need to do blood draws on her right now, but that I should do whatever her ped thought was best.

So, I am waiting on a call back from our substitute pediatrican right now to see what our next course of action will be. Just so you know... blood draws would have to be done at the hospital. Ugh.... for a germaphobe like me that is a very scary possibility.

So, please be praying for discernemnt for the doctors and for me as to what is the best course of action to take.

P.S. - there is no other symptom other than the fevers. No cough, no runny nose, no vomiting, eating fine, sleeping fine, playing fine. Just a slight fever.

Saturday, February 19, 2011

More Fever Updates

Today's update is much the same as yesterday's update. Anna Grace still has a fever of 99.6. I spoke with her pediatrician and cardiologist yesterday. Basically, I am to watch it closley. I'm to call the pediatrician on Monday to discuss what happens over the weekend. If the fever persists then we will need to schedule some more detailed blood work as well as a urine culture. Please pray that the Lord restores Anna Grace's body so that none of that will be necessary.

Also, Anna Grace's cardiologist did tell me that he would like to skip the "regular" echo in March and go ahead and schedule a sedated echo on her. So.... it looks like that is a definite thing for her coming up. It will have to be done at Greenville Hospital and is considered an outpatient procedure.

Friday, February 18, 2011

Fever Update

Well, I posted too soon yesterday about being fever free. Anna Grace was 100.2 last night and 99.6 this morning. Not much of a fever, but still a low grade fever. I called her pediatrician this morning to let them know. I also told them she was cutting a tooth and they told me that cutting teeth does not cause fever - not any fever - not even a low grade fever. They said that is an old wives tale. So much for the teeth theory. So, as of today she is still running a low grade fever. Her pediatrician is supposed to call me back today so we can chat. I also put a call into her Cardiologist. I'll keep you posted.

Thursday, February 17, 2011

Fever, Bows and Little Boys

So we've had an eventful few days.

Monday night Anna Grace woke up with a fever. Hitting about 102. No other symptoms. I took her to the doctor on Tuesday who ran a white blood cell count check - it was slightly elevated, but still in the "normal" range. They also ran a flu test, negative. The doctor said it was probably a virus. I think that is highly unlikely since we have been in lock-down quarantine. There are also no other symptoms and no one else in our family has the "virus". Basically it is an unexplained fever, which as a heart Mom makes me automatically think "heart". I am trying to not let my worry carry me away and am trying to pray each time I start to worry and turn that over to the Lord - where it belongs. It has been constant over the last few days for me... worry... pray...worry... pray. I am going to go ahead and call her cardiologist and let him know what's going on. We haven't had a good echo on her since she had her Glenn (6 months ago) - I think it really might be time to schedule the sedated echo to have a really great look at her heart. As much as I dread how difficult another hospital visit will be for Anna Grace. We really need to have a good look at her heart. I will let you know how this progresses. As of today, she is fever free and no other symptoms developed. If you are a heart Mom, you know where my thoughts are going on this one......

So in the midst of this fever, we received a care package in the mail. It was just perfect timing really, it was what I needed when I needed it. (Thank you Lord)! This care package was from someone I don't really know, but has been following Anna Grace's story since her birth and has been praying for her for all this time. I just started crying as I read the note from this sweet woman. How humbling... how thankful I am. This person found a website of a person who makes bows to help support families with heart babies. So, she bought Anna Grace a "heart bow". It is a beautiful little bow attached to a head band - it is adorable. She was also so thoughtful to inculde a little gift for Zachary as well. So... I wanted to share that with you and also give you the bow website in case you are interested in purchasing a "heart bow" for your little girl and making a difference for a family struggling with the financial responsibilities of caring for a heart baby.
Click here
to go to the website.

Now, a little something about Zachary. I don't mention his antics much, but he is a lttle boy full of energy and curiosity and unlike his sister he loves talking to people - any one - any age - any time. He is a social bug. So, since we have now moved into a neighborrhod we now have neighbors. Zachary loves it. Our neighbors to the left of us are an "empty nester couple". Their children are in their twenties and no longer live at home. The husband and wife both work during the day, but they have been so sweet to tell us we can play in their front yard which we do almost daily. When we are outside playing in the evening Zachary always asks me if he can knock and their door and say "hello". Sometimes I let him and sometimes I tell him no. I don't want him to be a pest knocking on their door everynight. They are very sweet when they open the door though and always talk with him and ask him about his day. My hubby made a comment a few nights ago that he hopes Zachary doesn't turn into "Dennis the Menace". That just tickled me because he absolutley has those "Dennis the Menace" tendencies. So, to continue on with the neighbors... the nieghbors on the other side of that couple is a retired couple. We see the wife almost daily and one day she invited us over to their backyard to sit in her porch swing. Zachary said "I LOVE it here" and talked with her and asked her questions and poked into every nook and cranny of her backyard. We stayed about 20 minutes and she said we could come back anytime. We had fun and it was nice meeting our neighbor, but do you see how "Dennis the Menace" could creep up here. Too funny.


Anna sporting her new "Heart" bow!

Sunday, February 13, 2011

Just a Few Things

So, it has been a while since I have posted any pics of us up and a lot has happened over the last 5 weeks or so. Here are a few pics to tell the story. Oh... and there is a SURPRISE at the end :)


The family went to Hatcher Gardens and you guessed it... Zachary can't help but climb something. He is such a little monkey!



Just look at this beautiful princess..... Anna Grace!



Daddy and the kids.... just melts my heart!



Zachary is a little photographer and did a pretty good job of taking a picture of Mommy and Daddy together!



Brian and I went on our first date since Anna Grace has been born. You read that right... we haven't been on a date in over a YEAR! Long overdue!!


Now for the big news.... yes, Anna Grace is walking! This was when she first started walking, about 4 weeks ago. She is nnow running all over this house. Seriously! How amazing!
video

Thursday, February 10, 2011

TV Interview

I was a bundle of nerves, but here it is... the tv interview

click here to view

Wednesday, February 9, 2011

The Latest Developments

Just wanted to let you all know that we are still on for the tv interview in the morning. However, there have been a few developments. My Mom... who is our designated quarantine babysitter..... has a co-worker with a child with the flu. So.... we have put my Mom on quarantine just to be sure she doesn't pass on any germies to us that she may have picked up at work. So... my hubby is now going to stay home with the kiddos tomorrow and I will be doing the interview alone. I'm disappointed my hubby won't be joining me tomorrow, but I am trusting the Lord that it is all happening as He designed it.

Another new development is that there is now a little snow prediction for us overnight. I'm really thinking it won't be much and shouldn't prevent me from going, but it seems to be just another complication to overcome.

With all that being said - I am still excited about the opportunity that we have been given to share Anna Grace's story and bring awareness of congenital heart defects. So.... tune it to Channel 7 at 10:00 am tomorrow.... maybe you'll be home from work on a snow day???

Sunday, February 6, 2011

TV Interview on CHDs

Since becoming a heart Mom I have felt led to try to do my part to raise awareness about congenital heart defects to the general public. After all, I didn't know ANYTHING about congenital heart defects until we received Anna Grace's diagnosis in-utero.

So... as many of you know... Congenital Heart Defect Awareness Week is THIS WEEK (Feb 7-14). I have been trying for the last few weeks to contact our local media to try to get some local press coverage about Congenital Heart Defects. After many unreturned voicemails and e-mails I was a tad bit discouraged.

So, I talked about my frusterations with my hubby. He took it upon himself to contact one of our neighbors who happens to work for a local tv station here in town. Our neighbor gave us the contact e-mail for someone at the station that might be interested in our story. We e-mailed that person a short e-mail about our story. That night, my husband and I prayed specifically for the Lord to open a door there.

The next morning I had an e-mail in my inbox inviting us to be guests THIS THURSDAY (Feb 10) on the local morning show in our area. So - please watch Channel 7 at 10:00 am this Thursday. The show is an hour long and we are not the only guests so I think we will probably have about 5 minutes of time during our segment to tell our story and talk about congenital heart defects.

I want to stop right here and give glory to God for this answered prayer. I am truly thankful for this opportunity He has given us.

I have called Anna Grace's cardiologist to get the most up-to-date statistics on congenital heart defects to share. I really want to do my best to represent our heart community as best I can AND be faithful to share how the Lord has carried us through this heart journey. Please be praying fos us Thursday morning. I have never been on tv before and I am nervous about it.

Whew... big week for us!

Wednesday, February 2, 2011

Anna Grace's Logs

When Anna Grace was born after she had been "promoted" to the "step down" floor at the hospital out of PCICU that was really when I first began my training as a heart Mom. One of the things which was so important during this time was tracking Anna Grace's urine output as well as her bowel movements, when she ate, how much she ate, when she thre up, how much she threw up, medicine time and amounts... you get the idea.

So at two weeks old when she was finally taken to "step down" I began the process, in my spiral bound notebook, of keeps charts and logs of all these things each day for Anna Grace. Because of her severe vomiting and reflux it really was important so that we could determine how much food she was getting.

Once we brought her home from the hospital (at 6 weeks old) I needed to continue tracking all this information and it was also a way for me to keep up with her MANY daily medications so that I didn't miss any. So, every day I prepared a chart for her medicine schedule as well as wrote down when she ate, how much she ate, when she went to the bathroom, etc. I did this every day until she was about a year old.

Shortly before her first birthday she was down to only three daily medications so I didn't need a chart to help me remember when to give them. I was an old pro by then. Also, at a year old we had her reflux under control (with medication) and her vomiting was virtually non-existent - so I stopped the daily charting in the notebooks. I just didn't need it anymore.

What this left me with was MANY spiral notebooks full of detailed information on Anna Grace's eating, bowels and medication. As many of you know, we recently moved into our new home (I know... you're still waiting on pictures). During the time of packing to move I was also purging lots of things that I didn't want to take with us to the new house - it was time to clean out the clutter.

When I got to all of Anna Grace's spiral notebooks I was stumped. What did I want to do with them? Did I want to keep them to show her one day? Would she even care when she ate or how many times she threw up when she was 3 months and 2 days old???? So after much thought, I decided to toss them. I know there are probably a lot of sentimental people reading this right now who are shocked that I would do that, but honestly I am thankful that we no longer NEED the spiral notebooks and that she is doing well enough to not have to chart all of it. I really don't think she will be interested (at least I hope she won't) in how many cc's of Portagen she ate when she was 4 months old and so they are gone.

It was really hard throwing them away though. Probably harder to lose those notebooks than anything else I purged during our move - there were just so many prayers and tears cried over those daily notations. But, I am thankful that she is thriving and I really don't want to hold onto THAT part of our journey. So...... I let it go. So continues the life of a heart Mom......