...my medical chart has had "Fetal HLHS" written in bold black ink across it.
...I have typed in "hypoplastic left heart syndrome" into the Google search bar.
...I have cried in the shower when no one is around because I am scared.
...I have went to the doctor once, even twice a week to watch a little heart flicker on a large screen and have doctors stand over me and explain, in detail, my son's condition to sonographers who have never seen a HLHS baby before.
...Benson and I have prayed every night and almost every moment of the day that God would be glorified in our son's heart...and that the Lord would give us a miracle.
However, today is a new day...Praise the Lord!
Yesterday was our weekly appointment in Louisville. We walked in expecting the same routine. Just like every other week, we greeted Dr. Tabb when he came into the room. He shook our hands, poured gel on my belly and placed the probe on top of me. Our little boy's chest popped up on the screen. We expected the same response we had heard every week since we had been seeing Dr. Tabb..."the blood flow looked good, baby was moving good, no change, see you back next week." However, the first three words that came out of the doctor's mouth caused both of our hearts to stop momentarily...
"Well, that's interesting."
The next few seconds seemed to last forever.
"These are the best images I have ever gotten of your child......"
A few more seconds pass.
"....and his left ventricle is much larger than I thought was."
Turns out, Luke has decided that he wants to shake everyone up a little bit. What was once a typical HLHS diagnosis is now an issue of "well, we really don't know what it is." Dr. Tabb is "cautiously hopeful" that Luke's heart is beginning to improve. What was once a "sliver" of a left ventricle has doubled if not tripled in size. Babies with HLHS typically have an aorta that is the size of a string due to the lack of blood flow going through the left ventricle. Luke's aorta, however, appears to be normal size. Before leaving his office, Dr. Tabb told us..."in all the years I have been doing this...I have never seen a hypoplastic baby like this."
Fast forward two hours later to our appointment with Luke's cardiologist.
I am laying on another ultrasound table while Dr. Arensmann performs an echocardiogram on Luke. We tell him about the images Dr. Tabb saw earlier that day and while he cannot get the same clear images - he begins to laugh and tells us, "consider it a GOOD thing that you have us all confused."
Basically, we are back at the beginning. No one can tell us WHAT is going on with Luke's heart. They can't tell us what will happen once he is born and how many surgeries he will have to have. They can't tell us how long we will be in the hospital or what life will look like for us in a few weeks. They honestly cannot tell us what to expect or even what scenario it could possibly be. We all, including the doctors and surgeons, will simply have to wait and see what Luke's heart looks like once he is born.
God reminded me this morning in my devotion of the blessing that comes when you WAIT upon the Lord. There are amazing promises that He makes to those who simply choose to be patient for the Lord's will to be done.
"For since the world began,
no ear has heard,
and no eye has seen a God like you,
who works for those who wait for him!" - Isaiah 64:4 (NLT)
"I waited patiently for the LORD;
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the LORD.
Blessed is the man
who makes the LORD his trust,
who does not look to the proud,
to those who turn aside to false gods." - Psalm 40:1-4 (NIV)
"Because of the Lords great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, "The LORD is my portion;
therefore I will wait for him."
The LORD is good to those whose hope is in him,
to the one who seeks him;
it is good to wait quietly
for the salvation of the LORD." - Lamentations 3:22-26 (NIV)
"Yet those who wait for the LORD
Will gain new strength;
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary." - Isaiah 40:31 (NASB)
In today's society - uncertainty means fear. To not know our future terrifies us. We feel that we must always know what is going on and that we should always have answers. However, God doesn't always choose to show us answers right away. There is a blessing that comes in having patience partnered with perseverance...in giving God our uncertainty and letting Him take control in the unknown of our relationships, our health and our plans for our lives.
Most people think that the unknown is a scary place to be - however, for a family who has went through the past seven weeks thinking of all that our baby will have to go through - we praise the Lord to "not know!" Yes, they cannot tell us that our baby DOES NOT have Hypoplastic Left Heart Syndrome - but praise the Lord - they can no longer look us in the eyes and tell us with certainty that he DOES.
Please continue to pray! As much as the doctor's like to "have all the answers" and give us an expected prognosis for our son's future, only the Lord knows Luke's heart. He is at work and most importantly, He is being glorified through it all. Yesterday was proof that the Lord is good and hears our prayers.
They told us that you cannot "fix" a Hypoplastic Left Heart - that only surgeries would save his life. However, our son is showing the world before he is even born that "nothing is impossible with God". - Luke 1:37