Does Our Hearts Good!

"The LORD is my strength and my shield;

my HEART trusts in him, and I am helped.

My HEART leaps for joy

and I will give thanks to him in song."

Psalm 28:7

Miss Maia Elisabeth "Ladybug" Sutherland had her first cardiologist appointment in 2 1/2 months yesterday and WOW is God amazing! He has done more in her little life than we could have ever dreamed! If God saw fit 6 months ago to take Maia from us so she could live with Him in heaven we were prepared and ready for whatever came and to give Him praise for He is good, but that was not His plans.

Dr. R reported to us yesterday that Maia is doing so well she MAY not even have to have the second valvuloplasty!

What?!? Did we read that right?!?

Yep! You did!

Here is the low-down.

1. Maia still has her VSD "hole" and it is measuring exactly the same as it did 2 1/2 months ago and pretty much the same as it did the day CHOP released her from the Cardiac Unit when she was two weeks old, but at the same time Maia's heart has grown and the hole has not grown with it! It is much smaller in relation to the size her heart was 2 1/2 months ago. Does this makes sense? I hope so. Anyway this is great! We will just have to see as time goes by if we need to do anything with that stubborn VSD or not. Hmmm.

Anyhoo!

2. The pressure in Maia's heart has gone down quit a bit! This is wonderful news. Babies with HRHS have a lot of pressure in their heart because of the narrow pathways and tight valves. In other words, it is really hard going, but Maia's pressures have calmed down.

3. So let me reiterate this from earlier in this post. Since Maia has such little pressure, her heart is growing well, and her VSD does not seem to be hindering her in anway...she might not need to have another procedure! Boo-yah! We are more than ecstatic! We are beyond thrilled! God you just blow us away!

4. Maia is doing wonderfully with her weight! She is now officially 15 lbs and 3 oz. Again...another wow! At the last appointment, Dr. R was very concerned with Maia's weight gain and was afraid she was trending down, but now Little Ladybug has made up for that it such a nice way!

5. She is strong. Anyone who has met Maia knows this! She has always been a bit of a she-ra, holding her head up when she was only about two weeks old, grabbing on to people's fingers with a death grip. Ladybug kept grabbing the ultrasound instrument from Dr. R yesterday, literally.
Everytime Dr. R was busy keying things into her computer and not actively working with the instrument, Maia was knocking or grabbing it out of the doctor's hands each and every time. i am not sure if the Dr. saw the humor in this. :)

Kenny and I are so very glad to hear this news. 2 1/2 months is a long time to wait to see how your daughter's heart has grown and changed. Everything was looking good from the outside, but we wanted definitive answers about what was going on the inside.

It was only suppose to be a 2 month wait and we aren't sure if everything is totally worked out with the insurance company and Dr. R's office. I think each side thinks they are in the right so I don't know what exactly is going on. All I do know is that I don't want a phone call the day before her appointment in August stating that we can't come in because of insurance issues once more.

Continue to pray for wisdom in how to deal with this. Should we stay with Dr. R who is very reknown in the field of pediatric cardiology and was a godsend to us as we prepared for Maia's entrance into this world, but has an office manager whom we prefer never to deal with again OR should we start the process of switching over to another highly recommended pediatric cardiologist, Dr. A? We really want to have the best for Maia. We want God's best. May the Lord direct to the best decision.

Three months now until the next appointment. She is doing that well! Thank you, Lord! Nice belated half-year present!

"The steadfast love of the Lord never ceases,
His mercies never come to an end!
They are new every morning! New every morning!
Great is thy faithfulness, Oh Lord! Great is thy faithulness!

Our Heart Hero's Half Birthday

Well, today is officially one half year with our ladybug, Maia! We weren't sure when she was diagnosed in utero last August if we would get to have this celebration, but here it is! She is 6 months old today! Hooray!

It is 6 months and NOT a year yet,...cupcakes and cake in general were out of the question. Anyone for sweet potatoes and oatmeal birthday surprise??? Hmmm???

We have had a mild rollercoaster ride compared to so many who have received the diagnosis of Hypoplastic Right Heart Syndrome for their child, but nonetheless it has been a rollercoaster year.

Helen, her sitter, and Maia celebrating today

6 months ago we heard the loud cries of our daughter in the labor and delivery room at Children's Hospital of Philadelphia. She had some major lung capacity going on and we were so very thankful. We had been praying for months to be able to hear that cry on the day she was born. It was so beautiful.

Now we hear that cry and we are still so very thankful. It might get a bit wearisome at 2 a.m. in the morning, but please Lord, please never allow us to become callous to that wonderful and beautiful cry!

Maia, today, wearing Daddy's Baseball cap OR is it balancing on her? Hee hee

The day after her birth she received her valvuloplasty, massaging her pulmonary valve open with a tiny balloon threaded from her femoral artery, the balloon, smaller than the width of a hair! Amazing! She had two transfusions that day, but that beautiful chest remained scar-free, hopefully we can keep it that way, but however the Lord sees fit. We will praise Him.

5 1/2 months ago Maia was discharged from the hospital and we made our way back to our home in New Jersey. We never expected to leave so early. We thought for sure that we would be in Philly for a good 4 to 6 weeks. That is what they had prepared us for. That was being realistically optmistic. But God's reality prevailed!

For the first month we saw the pediatric cardiologist each week. Then the next month, every two weeks. Then the next month we waited four weeks. Now we are waiting 8 weeks.

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The next procedure should be in about 6 to 18 months depending on the growth of her heart and the blood flow. Another valvuloplasty will be in order.

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Milestones she has completed since her six months on Earth...

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Laughing at and being totally mesmerized by her big brother

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Reaching for toes to suck on and chew

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Eating sweet potatoes, berries and bananas, peas, applesauce, and oatmeal

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Finding her voice. She rarely cries, instead she yells at us to get our attention. Okay, Maia!

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Sitting up, almost by herself.

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Turning over and scooting on her belly forward and backward (not really crawling right now)

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Friends and family have rallied around Maia and our family from the time of Maia's diagnosis, birth, homecoming, and the Love keeps going on! Thank you so much! I know Maia would tell you if she could!

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We have truly enjoyed our Little Ladybug these past 6 months. Thank you, Father, for this time with her. She is a little dynamo of strength and energy. Thank you how You designed her so perfectly!

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Maia, is truly our Heart Hero!