Our little Miracle

Our little Miracle
"And the Child grew and became strong in spirit, filled with wisdom; and the grace of God was upon him." ~Luke 2:40

Tuesday, February 21, 2012


Austins echocardiogram was yesterday, 2/20/12.  I sat in on the echo, and he was a little bit irritated.   We were able to get him calmed down for about 5-10 minutes before he'd squirm and become irritated again, and then another 5-10 minutes.  This is not an invasive procedure.  It is simply an ultrasound of the heart.  The echo, this time around, was only about 30 minutes long. 

I received the results while at my older sons basketball  practice.  His last echocardiogram showed his pulmonary hypertension at 36% and this time around it had risen to 60%.  The resident I was talking to didn't have very much information for me about this.  I was extremely nervous, upset and really, confused.  I wasn't getting my questions answered enough to feel good, or bad for that matter.  Feeling unsure is just as much of a panicked feeling as any.  I sent my husband down to the hospital with loads of questions and stayed through my sons practice, trying to keep face. 

I knew that last time the doctors had told me they were impressed that Austin was only at 36%, with his CLD (chronic lung disease) and that it was not a number in which they would want to intervene.  He said that they have babies in the 60's 70's and 80's and those are numbers in which they would intervene.  So my immediate thought was OH NO.  His number was 60% now.  (All in all what this means is that when you have pulmonary hypertension -high blood pressure of the vessels surrounding the lungs- that your right side of your heart is working harder the the left, as the right side is in control of your lungs, and may become enlarged)  I was so upset.  Does this mean his heart is enlarged??  Does this mean we have to STOP the weening process to get him off of the oxygen?  Does this mean my child is in immediate danger of respiratory or heart failure?  Does this mean his chance of survival has changed???PLEASE TELL ME... what does this mean?  My only answer was that it would be discussed in the morning rounds.  GREAT, now I have to go all night without knowing.

My husband called me as soon as he talked with a doctor. He was able to get some "on the surface" answers, but I needed to dig deeper.  She told him last night that its not the direction they want to see the numbers go, but that its not emergent that they react.  She said the attending would evaluate Austin and decide a route from there.  The medicine that they would administer is Sildenafil (Viagra).  It relaxes the blood vessels.  The side effects are eye and vision problems, and some swelling.  I do feel better once I talked to my husband, but I need to get to rounds in the morning.

Fast forward past the negative thoughts, flood of tears and discouraged feelings, and restless night.... I get to rounds as Dr. A is explaining to my husband that the numbers are just numbers.  He said he would NEVER hang his hat up on numbers alone.  THE BABY MUST BE SYMPTOMATIC TO REACT.  Bottom line.  After consulting with a neonatal cardiologist to make sure he is correct, he explained that the percent of pulmonary hypertension isn't always so cut and dry.  There can be many factors in the number.  For instance, his HR was higher this time around bc the last one he was zonked out asleep, and this time around he was irritated.  He is older and more alert now, ETC.  He said that Austin's pulmonary hypertension's cause is because he has CLD.  This isn't a situation where they do not know the cause. AND, since CLD causes pulmonary hypertension, they treat the CLD.  With time, growth and lung maturation, the CLD will improve and so will the PH.  He just needs time.  Other than the PH, he has a great heart.  All valves are closed and there is no shunting.... his heart is not enlarged and its doing just fine.  He said we would not administer a medicine we know for sure has this and that side effects, but we do not know for sure, confidently that it helps with PH alone.  So, unless he becomes symptomatic, and shows us he needs something to "change", we're not going to fix something that isn't broken.  In the next few years when his CLD is getting better, so will the PH.  And if not, we can explore treatment options then.  Unless he shows us something just isn't right, we will continue on the path we are on.  He is weaned to 3L today, and as of lunch time, is handling it well.

I felt 100% better after rounds today.  I feel so confident in his doctors!  I am happy with that.  When they say he needs time, they mean years.    Austin will get there!  I have seen him make strides of progress since the day he was born!  He is a miracle and I have to remember ALWAYS, GOD IS GOOD.  He is a rewarding GOD.  He is a loving GOD.  He is AMAZING!!!   He will always take care of Austin, and He will allow Austin to heal in the time he needs to do so.  I just need to sit back and be patient and continue to turn to my FAITH when I am feeling so bad.  I have to remember this.... as it is my favorite....  "And the Child grew and became strong in spirit, filled with wisdom; and the grace of God was upon him." ~Luke 2:40 

GOD knows what Austin needs and he has put him in the hands of the right doctors to relay to us what exactly that is.  TIME.  

Again, from every depth of my heart, I thank you all for your continued PRAYERS.  I can honestly say, if I don't look 10 years older than I am, I feel it.  I am worn out.  Exhausted.  BUT I have so much left in me.  I will be good.  Austin will be good.  My family will be good.... because, all in all, GOD IS GOOD. 


  1. Your faith is beautiful, God is good and has you and Austin in his hands. I miss you so much and think of you all and try to pray every moment I can. Chris

  2. Austin we are praying for you and keep getting stronger!!! You are doing a great job! Lindsey W.