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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Tuesday, August 30, 2011

Family Update

I am really sorry that it has been such a long time since I have updated. I wanted to take a minute to fill you all in on what has been going on with our family. It's all good, we've just been busy!

Zachary finished his last swimming lesson last week. He has been taking swimming all summer and is doing terrific. Completley beyond my expectations of where he would be with swimming at his age. He is swimming freestyle, back stroke, can dive and float on his back. I think he may be a better swimmer than me now! We're letting him take a couple of months off from swimming because this week he started soccer!

This is the first time he has ever played a "team" sport and I am excited about the opportunities he's going to have learning how to play as a team. He had his first soccer practice last night. Although, I truly felt sorry for the coaches trying to keep a gaggle of four-year-olds together and on task. It was like herding cats. The boys were a lot more interested in goofing off than learning to play soccer. We'll see how the season progresses. I'll keep you updated, but Zachary did have a terrific time at soccer practice (other than running full speed ahead into the soccer goal - bam - right into it)! Running into the goal didn't seem to phase him as much as him not winning the running race - which it wasn't a race, they were just running laps, but somehow he got it into his head that it was a race and his goal accident made him come in last. Poor kid :) Paying attention is hopefully something else he will learn during this soccer season!

Last Wednesday Zachary started school for the very first time. He is in 4K and is going to school 5 days a week from 8:30-11:30. He really seems to be enjoying himself although has had some difficulty refraining himself from talking during class - big surprise (NOT)!! I jokiingly told Brian that if Zachary could learn nothing else this year except how to sit in his seat and be quiet then I will feel like we've gotten our money's worth! It is going to be a challenge for our little social bug.

Since starting school Zachary has managed to already catch a head cold. He hasn't run any fever or anything but he definately has a cold. He was also sweet enough to share his cold with his little sister so the last few nights I have been up with AG because she can't breathe through her nose and she has to have her paci to sleep. So, since she can't suck on her paci she can't sleep so Mommy has been partying a good bit during the night. Sigh. I am preparing myself for staying sick this entire school year - everyone tells me the first year of school is like that. We will all be heading to the doctor in October for our flu shots and any other kind of shot or vaccination they can give us to help keep us well.

Speaking of shots. Anna Grace's pediatrician is still working on getting her Synagis approval. Please continue to pray about this. I'll keep you posted.

In my mind I thought that I would have TONS of one-on-one time with AG while Zachary was in school, but honestly since he started school I have mostly been running erronds wtih AG because lets face it - it is easier to run erronds with one chid instead of two. Hopefully next week I'll be a little more caught up with my running around and can just do some fun girl things with AG.

So, I have a bunch of pictures from the last few weeks I need to post and I will hopefully get to that later this week. But, I wanted to go ahed and update you on how we were. Thanks for keeping up with us and for continuing to pray for AG!

Friday, August 19, 2011

Wednesday, August 17, 2011

Anna's Heart

I found a website called www.heartbabyhome.com and they had a picture and explanation of Hypoplastic Right Heart Syndrome that I thought I would share with you to help better understand Anna Grace's special heart.

Now, that being said this picture and explination is not entirely accurate as Anna Grace's condition is so unique - in addition to what is listed here she has Transposition of the Great Arteries which means her Aorta and Pulmonary Artery are flip-flopped and she has aortic co-artation which means that her aorta is so narrow they had to splice it and graft a goretex type material on it to allow blood flow through her aorta. In addition, the valve leading to her aorta was not useable so blood was re-routed through her pulmonary artery and then a y-connection was made off her pulmonary artery to her aorta. Also, she doesn't have Patent Foreman Ovale, she has an atrial septal defect instead which just means the hole she has is bigger than a patent forman ovale. Complicated, I know.

But, this was the best picture and explination I could find to help you understand a little bit of what her heart looks like. I hope you find this helpful.

Hypoplastic Right Heart Syndrome (HRHS): the right side of the heart is underdeveloped–including the right ventricle, the pulmonary artery (which carries oxygen-poor blood from the heart to the lungs), and the valves controling the bloodflow of the right ventrical (tricuspid valve, pulmonary valve). These valves may be narrowed (stenosis) or missing (atresia). Excess pressure in the heart leads to an patent foramen ovale (PFO) and a patent ductus arteriosus (PDA).

Hypoplastic Right Ventricle (RV) [hypo=under, plasia=formation or development, ventricles=lower chambers of the heart] The right ventricle is underdeveloped. It is too small. This means the heart will have to work harder and won’t last as long. Sometimes the valves entering or leaving the right ventricle are also too small or fused shut. (Tricuspid Valve, Pulmonary Valve).

Patent Ductus Arteriosus (PDA) [patent=open, ductus=duct, arteriosus=artery] – an extra passageway between the pulmonary artery (carrying oxygen-poor blood from the heart to the lungs) and the aorta (carrying oxygen-rich blood from the heart to the body). The ductus arteriosus is open in a fetus. This allows extra bloodflow in the forming baby while it’s getting oxygen from Mom instead of its own lungs. The PDA normally closes around 10 days after birth.
Patent Foramen Ovale (PFO) [patent=open, foramen=opening] – a hole between the two top chambers of the heart that is covered by a flap. A cough, sneeze, or strain can cause this flap to open-–letting blood flow where it shouldn’t.
hypoplastic Pulmonary Artery (PA) [hypo=under, plasia=formation or development] the main vessel carrying oxygen-poor blood from the heart to the lungs is underdeveloped and too narrow.
Pulmonary Valve Atresia (a) [pulmonary=having to do with the lungs, atresia=without openings] a complete blockage of the pulmonary artery (which carries blood from the heart to the lungs) caused by a missing or fused-shut pulmonary valve.
(overriding) Tricuspid Valve Stenosis (t) [overriding=reaching too far, stenosis=narrowing of a passage ]– The valve between the right atrium and the right ventricle is too narrow (stenosis). It also pushes the blood passed the right ventricle and into the left ventricle (overriding) because the right ventricle is too small.
Ventricular Septal Defect (VSD) [septum=wall between the chambers of the heart, ventricles=lower chambers of the heart] – holes in the inner walls of the heart allowing extra blood flow between the two lower chambers of the heart (ventricles). This causes the oxygen-rich and oxygen-poor blood to mix before leaving the heart.

Tuesday, August 16, 2011

Cardiology Results

Anna Grace and I just got home from her cardiology appointment with Dr. R. It was an amazing appointment. Thank you all for praying for her. She sat still and quiet during the whole echo. I mean she didn't make a peep. She didn't fuss or cry and they were able to get terrific pictures of her heart. It is such a blessing and an answer to prayer. The Lord has His hand on her today and we are thankful.

Now for the findings...... Dr. R said her heart looked as it should right now. No fluid surrounding her heart, no significant mitral valve regurgutation, her aortic arch looked fine, her pulses were good. We don't have to go back to see him again until December. Amazing!

However, he did say that since her weight is now almost 28 pounds that we can be prepared for a spring pre-fontan heart cath. Dr. R likes his pre-fontan caths to be done at 30 pounds. He said if she hit that during the winter that it will be OK to wait until Spring for the cath. Then we can plan on having the Fontan in the summer. Ughhhh.... Honestly, I know it has to be be done I just wasn't prepared to have it next summer. I'm sure the Lord will prepare us all as we get closer to Fontan and so for now I'm not going to dwell too much on it. For now, I'm just going to celebrate the miracle of today! Thank you Lord!

Monday, August 15, 2011

Cardiology on Tuesday

Anna Grace has a cardiology appointment on Tuesday at 1:00 pm. Please be praying that the Lord will calm her so that Dr. R can get a good look at her heart. As you might remember, she did not cooperate at all during her last cardiology visit. That means tomorrow's visit is SO important. If tomorrow doesn't go well I am thinking that AG might have a sedated echo in her future and I really don't want to have to do that.

I am planning on giving her a MAX dose of Benadryl tomorrow to help get her sleepy and her appointment is during her regular naptime (which may backfire on us).

Mostly, I am just asking for prayers for her to be calm. Dr. R hasn't had a good look at her heart in some time and if there is something sinister going on in there we need to know about it.

Thank you all for being so faithful to pray for her. I will post tomorrow how things go.....

Friday, August 12, 2011

5K Race to Benefit Palmetto Hearts

As most of you know, I am part of a committee planning a 5K Race in the Spring of 2012 to benefit Palmetto Hearts charity. We had a committee meeting last night and I am super-excited about how the race is starting to come together. Mark your calendars and PLEASE plan to come walk or run that day.

Check out my friend Laura's BLOG for more details about what we've got going on with the race!

Click here to go to Laura's BLOG!

Monday, August 1, 2011

What's Next

This clip was posted on the Sister By Heart website regarding Hypoplastic Left Heart Syndrome. Anna Grace has Hypoplastic Right Heart Syndrome, so not exactly the same, but the two diagnosis' are treated the same - the three surgeries. I was very encouraged after watching this and I hope you are too :)

Click here to watch

Cardiology Reschedule

Anna Grace's cardiologist decided that the best thing to do was to reschedule her appointment to August 16 to give her the best opportunity to be calm during her echo. So.... no cardiology tomorrow. Hopefully by August 16 she'll be fully recovered from her strep and off the antiobiotics. I do think that I'm going to quarantine her until after her echo just to be sure we keep her well and that we don't have to postpone again. It's just a couple of weeks - no biggie for a vetern heart mom :)