Thursday, August 28, 2014

To all Mommies with a prenatal DS diagnosis

As I stare into our baby boys' beautiful blue eyes this morning, that routine memory creeps into my thoughts, if only for a second.  Luke's presence brings me so much pure joy, from the moment I first laid eyes on him.  It's an unequivocal sense of pure love, as I felt for all of our children.  There is one difference with Luke however. That unwelcome memory that crept in my head this morning.  That memory that was laid down just 10 months ago, when I was made to believe that he was not lovable...he would not bring pure joy to us and the world.  Within five minutes of seeing all the markers on the ultrasound screen, I was asked if I wanted to continue with the pregnancy, or terminate.  My mind was flooded with thoughts. I actually let fear creep into my mind for a few minutes.  How are we going to do this? We have five other children!  Will he walk? Will he talk? Will he be accepted?   Then with one big exhale, I released that fear. I felt the presence of the Holy Spirit more profoundly than I ever have.  At that moment, God knew exactly who Luke was, and who he will grow into.  His purpose was set long before he was forming in my womb. And where there is life, there is love.  So why does that memory still give me chills today? It all ended happily, right? I think about all the other mommies that are given that choice in that time of fear and despair.  I think about how "special needs" is painted as something awful, and that will take away from our joyful happy lives. They will require more time, more effort, etc.  I think about how their diagnosis or label is painted as unlovable.  My wish is for every one of these mommies getting that diagnosis today, to know that they will love their babies unconditionally. And more blessings will come from their Baby's life, then they would have ever have thought possible.  They will be changed in a positive light, in love, in acceptance, in empathy, and they will grow.  They will grow in faith. They will grow in love. And isn't that our purpose in this life? To take that faith and love and share it with others?  I feel as though now that I was blind. Blind to the truth.  And where I was blind, I now can see.

Monday, August 25, 2014

The Pants

On Sunday morning, we were all getting ready for mass,  and Joseph lays his newly pressed pair of khakis on the edge of the bed.  He then gets in the shower. Meanwhile, Luke was laying in the middle of our bed, which quickly attracted Olivia, Joshua, and Eliana.  The king size bed, covered in a mountain of down blankets and pillows, topped off with a cute baby, was too much to resist!  They were rolling and doing  somersaults off the left side, then  the right side..... you can only imagine Joseph's face when he walked out of the bathroom in his boxers, anticipating that his nicely pressed pants were on the side of the bed still obediently waiting for him.  The kids had already moved on, and left a mound of wrinkled church pants on top of the bed. I cannot tell you how hard I was laughing. I think I actually had tears coming out of my eyes. It was just one of those moments.  And now that the kids are back in school today, you would think that I would be excited to have some order back in the house, and have time to make everything neat, organized, and clean again, but I miss them so much. :-(. My heart physically aches this time of year, when we are saying goodbye to summer, and goodbye to the freedom of having lazy days.  I long to look out the window and see them playing explorer together, with their binoculars and bug boxes, and little straw hats on their heads.  I already miss seeing my 12-year-old give soccer lessons to the younger ones in the front yard.  I miss seeing Anna contrive up a new smoothie recipe, while dancing around the kitchen with Olivia to her Frozen music.  Although there is much to mourn, I know there is much to celebrate. I know they are learning and growing, and experiencing new opportunities as we speak.  Sigh.....

Friday, August 22, 2014


Joseph and I were taking a walk together last night (our typical date night), and just reflecting on the previous week. Both of us were agreeing that the entire surgery and healing process were not what we expected, with exception to the first 12 hours in the ICU.  That first night after surgery was quite frightening, seeing your little baby being kept alive with machines and medicine.  Yet it was not long before he started to wake up, and breathe over that breathing machine.  He started to fight! And ever since, each day of healing is what we were anticipating to be a weeks worth. And now, life continues. We feel as though we went unscathed, almost as if none of it happened. It's so peculiar. And what is remaining? For Luke, a beautiful zipper, which will be a little reminder to him to give thanks to God for every living day. And for us? A deeper level of trust.  In his book "Falling Upward",  Jose Escriva talks about our growth in our relationship with our Father, the sanctification process, and climbing the ladder to holiness.  He writes about how most people do not start climbing this ladder, until they are brought to their knees, through what we would normally view as undesirable circumstances.  These circumstances seem so undesirable at the time, but once you are in it, and get through it, you end up so enlightened....

Wednesday, August 20, 2014

Dancing Queen

We were awoken not by Luke and his cries of hunger early this morning, but rather by little footsteps entering our room.  Our sweet little three-year-old princess was eager to remind us that this was the day that her ballet class was to begin.  Every five minutes from that point, she asked me if it was time to put her ballet leotard on.  After two hours of this, her excitement was not waning!  She convinced her five-year-old brother to join her in waking up big brother, to ask him if he would like to tag along for her first class.  They were very cautious in  doing this of course, as teenage siblings can be on the grumpy side when woken up to early!  Two attempts, and not a word or even a flutter of an eyelid.   Just fifteen minutes before we leave for class, and Gabriel shoots down the stairs, asking me how much time he had to get ready. He insisted that he wanted to be there to walk his little sister into her first ballet class.   So these are the moments as parents when we stop whatever we are doing, and smile from the inside out.  When we witness an act of love between them, an act of selflessness, and feel the presence of the Holy Spirit working in our children's lives, it leaves us speechless.

Tuesday, August 19, 2014

Six Days Post Op

We had heard from several heart baby parents, that we would have a new baby after surgery.  New baby after surgery? What could they possibly mean?  He seemed so perfect just the way he was!  A little fatigued, but what baby isn't? Well, now we know. Before surgery, we always commented that he was by far our easiest baby. He was the definition of "chill".  If he was really upset, he would literately not cry, but say "waaa".  And then he would be worn out. He was our first child that did not need a pacifier for soothing. However, now that he has that nice balance of oxygenated and deoxygenated blood circulating around his beautiful little body, little guy has discovered that he has lungs. He can actually cry now!  And he can turn a particular shade of bright red that is reminiscent of a ripe tomato, if we are not meeting his particular need at that moment.  Wow! We had no idea that he was so opinionated!  And a pacifier is absolutely a must now. On the flipside, his  "conversations" with us have been much longer, with many more smiles in between.  And it's so nice to see him with a beautiful hue of pink within his skin now.  The new and improved Luke!  Every day, he seems to be getting stronger and more awake. And his zipper on his chest is healing up quickly.  Simply amazing.

Monday, August 18, 2014

Dear Mommy and Daddy

Dear mommy and daddy, thank you so much for choosing to bring me into this world, and into a home with my three beautiful sisters and two big brothers.  I love how Annaliese makes silly faces at me and sings me sweet little songs. I love how Gabriel sits in front of me and teaches me all about his favorite English Premier League club team, Chelsea FC. I love how Olivia scoops me up and cuddles with me, every free second she has.  I particularly enjoy holding onto her long blonde locks.  I love how Joshua lays beside me on the floor, and talks to me like I am five years old too. And I love my big sister Elliana, as she expressively shows me constant affection, usually within 3 inches of my face. I want to thank you for accepting me just the way God made me, extra DNA and all.  I love waking up every day to a family that cuddles with me, smiles at me, talks to me, and makes me feel so loved.  I'm so grateful that you were by my bedside when I came out of surgery, and for not losing faith that our Father would take care of everything.  I'm grateful for all the hundreds of people that were praying for me, day and night.  I cannot promise you that I will not go through my terrible twos as a saint, or skip over my three-nager year of attitude.  And I cannot promise you that I won't throw my dirty clothes on the floor, forget to take my plate to the sink, or ever use the word "no" to you!  But I can promise you that I will always be grateful for your love and support, for the faith you pass to me, and for the family that you surround me with.  And I can promise you that you will be thrilled to see me live out the purpose God has intended for me. 
With Love, Luke

Sunday, August 17, 2014

Going Home

Thank you for all the prayers everyone! We are headed home.....

Mended Heart

The last of the remaining tubes were taken out last night, along with two of the remaining monitors.  His beautiful smile is surfacing again, and he's engaging in "conversations" with us.  He's surprising his doctors, and there's even talk of discharging him later today.  Wow!!!  I cannot tell you how many times I've heard medical professionals use the term "wimpy"  when referring to children with DS, in relation to how they heal and recover.  As of right now, not so much!  Lets continue to pray that little Luke continues to heal and become stronger.  Go Luke!!!

Saturday, August 16, 2014

Hospital Fashion Sense

Sweet four month old Luke is proudly sporting his stripes in these cute leg warmers, providing warmth to his little legs, and easy access for diaper changes.  Mommy gives these two thumbs up!
This sweet soccer hat makes these baby blue eyes sparkle, while providing brotherly support for big brother, who's playing in the first tournament of the season today.  Go Gabe!  I love you bro! (Hat is compliments of Lisa Schloeder).

Good morning sunshine

So who needs sleep after OHS?  Not this little guy!  Only mommy did not get that memo, so I was completely surprised when he woke up every hour on the clock to be rocked in mommy's arms.  I'm not complaining though.:-). He is now completely off of supplemental oxygen, and has minimal drainage from his chest tube.  We are hoping that it will be removed today.  He's taking tylenol for pain.  He's on his way to recovery!  Praise be to God!

Friday, August 15, 2014

Good Appetite

So little man Luke is resuming gallantly to his three favorite sporting activities... smiling, looking cute (naturally with little effort), and eating.  He managed to slurp down 6 bottles during the night.  And I, his mommy, was completely overjoyed to be at his beckon call every time he woke up.  It is completely amazing how resilient these little people are!  Life resumes so quickly after open heart surgery.  

Today he will get his second chest tube removed, as well as his heart leads.  This will make it much easier to pick him up and cuddle.  Yeah!  He does have some residual congestion as a result of the breathing tube, and will continue to be on a low dose of oxygen, and LASIK to remove the extra fluid around his heart.  We were able to see his chest X-ray taken right before surgery, and his heart was taking up 2/3 of his chest cavity.  Like any muscle, if its working hard all the time, it will get bigger.  ❤  Seeing that xray made it even more real for us. Now that its fixed,  over time, it will resume to a more normal size.

Yesterday evening, the hospital chaplain stopped by for a visit.  He commented on how much he loves this hospital, as it is filled with so much love and healing.  I have to admit, when we came to Levines Children Hospital for the first time on Monday, I was thinking the opposite.  I couldn't get over seeing sick kids in wheel chairs and hospital beds, and wanted to see those children free from these walls, doing things that kids should be doing.  But the chaplain was right.  Isn't this life?  Curve balls can be thrown at us at any time.  Sometimes we can jump, sometimes we can move to the side and have a "close call", and sometimes they just hit us.  And instead of pleading "why me", these are the opportunities for us to use our faith.  To be reminded not to take things for granted. To be reminded that our Father does not abandon us.  To bring us together as brothers and sisters through L❤VE, through His presence. 

Dear Heavenly Father, today we are so grateful for Luke's life, for these amazing doctors and nurses, and for taking all of our fears and anxiety away during this process.  Thank you for helping us accept the unknowns, and filling us with your peace and love.  We will forever be grateful for this.  Amen.

Thursday, August 14, 2014

Movin On Up

Luke was just moved up to the 8th floor, into the "progressive unit".  He spent only 24 hours in the ICU.....little tough guy!  The nurses all love him and call him feisty one-as he loves to pull his oxygen tubes out of his nose, and push any prying hands away.  He still has one chest tube in, as well as his heart leads.  We're still trying to wean him off of the O2.  Will keep you posted...

A successful night

His first night in the hospital was a steady and uneventful one.  No major surprises surfaced, and Joseph and I were actually able to get some sleep.  We had an incredible nurse that stayed with Luke the entire night, administering different medications which seemed like every 10 minutes, turning alarms off, moving tubes and wires around, etc. Talk about a high stress job!  Thank God for good competent nurses.   This morning they extubated him, and with that, he had some strider, which they medicated him for.  They are going to wean him off the Phenol today, and put him on a low dose of morfeine.  He should be able to resume eating today.  

Wednesday, August 13, 2014

Luke's Surgery Day

We knew this day would come, as of nine months ago. It was that very first ultrasound we had, when I quickly suspected that something was wrong, as the technician spent 45 grueling minutes taking images of his heart.  I knew that we could all handle an extra chromosome, which has proved to be an indicator of extra cuteness. :-) But open heart surgery?  And quickly, God answered. By blessing us with such a wonderful and Godly man named Dr. Hamill (pediatric cardiologist), and one of the top heart surgeons in the country, Dr. Peeler.  And he topped it off with hundreds of friends and family who vigilantly prayed on their knees for Luke, leading up to and on the day of his surgery. This day, my heart is overflowing with love and gratitude.  Luke is so blessed.  Yes, God did answer. And although I teared up this morning as I rocked him in my arms and sang "You are my sunshine ", I knew in my heart that God had this. God has an ultimate purpose for his life, as he does for all of us. We all felt at peace during the surgery.  Thank you Heavenly Father.