Wednesday, September 23, 2009

Her little heart is blessed

So, I asked a few weeks ago for blessings for our little Mary Louise's heart, I should have known that our army would pull through. Major triumphs to date...1. 5 days with our little Kuylen, 2. oh wait - lest I forget being allowed 4 unexplainable weeks on bed rest with moderate to severe preeclampsia and being allowed to just barely cross the board into viability and therefore give our little ones at least a remote chance at survival, 3. did I mention 5 days with our little Kuylen?!, 4. Mary Louise and David - only 1 infection each - both considered mild by NICU standards, 5. 2 babies home - barely medically dependent - developing beautifully!, 6. MARY LOUISE'S HEART IS OK!!!

So we went to the cardiologist today - Mary Louise and I did. They did a 12 lead EKG again and another echocardiogram to check any progress made in the PFO arena and to also check her pulmonary pressures. Her PFO is estimated at being less than 10% open!! Her pulmonary pressures were a little below high normal (and that was when she was kicking and moving around on the table!) She was amazing! The doctor came in to talk to me and said (and this is a direct quote), "I have good news!" Oh my gosh! I've waited so long to hear that simple phrase! He was pleased with her progress and weight gain and is allowing me to taper her oxygen to half days right now. Saturday, we will take her off of oxygen completely and see how she does the rest of the weekend. Monday, I will have a follow up phone call with the doctor and if she is continuing to do well, she will be weaned / taken off of Lasix. We will see how she does from there - keep the O2 supplies at our house for awhile just in case she relaspes and have her re-checked in office in about a month.

This news couldn't have come at a better time as my sweet Mary Louise has just about had it with her momma shoving tubing up her nose all the time. She came home and took a very long nap - as if she hadn't slept for days (which, P.S. is not true - she's actually been sleeping quite well).

Now, that's the good news - but as I said, we must not relax too much. The good news was followed by, well let's just call it other news. Mary Louise has a coronary artery fistula. It is rated as very small. It is an opening from the coronary artery which supplies blood to the heart muscle. The opening causes blood to be pulled from the muscular supply and sends it to her lungs. The blood leaking to her lungs is a negligable amount as far as the pulmonary system goes. However, the concern would come if the fistula would grow and in effect steal more blood from the muscular circulation as the supply to that area is very small to begin with. Having said that, the doctor feels that the location of this fistula will allow the hole to close rather than grow larger. It is expected to get better and even disappear altogether over the next couple of years. So, he is going to follow her every few months or so- and then every year until her condition resolves (hopefully).

Congrats to Mary Louise for her steady progress! She was 7 pounds 10 ounces (umm - dry diaper and no clothes) today. She was so well behaved - grinning and wide eyed with everyone there. Then she fell asleep immediately when we got in the car.

Thanks to Ma Mere and Pop for giving me time to muddle through the post office and go and get my flu shot. Hats off to the guy at Walgreens for giving the most gentle shot ever!

Thankful for our countless blessings.
XO, Heather


  1. Yay great news! Keep up the good and hard work babies. Love and Kisses!

  2. I am so happy for you, Brent,and the babies! Keep the good news coming! Love you all, McCall