A tube for food!

WARNING: I am not an editor like my sister who wrote the previous blog, so don't judge my grammar. I am a nurse and we chart in sentence fragments :) so sometimes it's hard to adjust from that.

Marley's update! Well, last Tuesday we had a heart cath to see what was causing all the problems Marley was having. The cardiologist and the PICU doctor decided Marley was aspirating her food into her lungs and she would need a g tube (mickey button for those who are familiar with feeding tubes). The g tube is a tube that is in her tummy that will allow us to directly feed her into her stomach instead of by mouth. She will still be able to eat by mouth just not right now. She had an esophageal wrap too which will prevent Marley from aspirating. The heart cath also showed Marley moo (that is her nickname) has extremely high pulmonary hypertension that is life threatening. So we hoped the g tube would give her lungs time to heal and give her heart a break.

The decision to do the surgery was a difficult one for me and Brian, we were worried this was an unnecessary surgery and the doctors were missing something. But our families both said if we don't do it then we will feel terrible if something happened and we could have done one more thing to help Marley. Since the g tube was placed last Wednesday Marley has remained on the ventilator, developed pneumonia in both lungs, and her left lung has collapsed. They are now placing Marley on her belly for twelve hours a day hoping it will allow her heart to fall forward and take the pressure off her lung. Finally after a few days of doing this Marley's lung has shown some signs of improvement. Praise God! So the doctors are hoping Marley can be extubated tomorrow. It has been a very up hill battle for my sweet girl, but she is such a fighter.

Marley has a lot of people praying for her and we are so thankful for all the prayers and thoughts for our sweet family. Brian and I are also very thankful for the support from our families and friends, we would not be able to make it through all of this without you guys. Please keep us in your thoughts and prayers and be thinking of Marley Moo tomorrow when they extubate her. They really do not want to have to reintubate her with her pulmonary hypertension because this could cause her to go into a crisis situation and possibly lose her life.

Marley is the toughest girl I know, and I am so thankful she is my daughter. I have never met someone who has wanted to live so much. I don't know if she is doing this because she knows how much I need her, or if she is fighting so hard because she needs me. But either way I am thankful for her fighting spirit. My Marley is a miracle baby. We still have a couple surgeries after this so we will keep you updated. Her next surgery is a big one it's her open heart surgery for her TAPVR if her lungs heal correctly. Pray for Marley and strength for us. Thank you guys!


My sister Whitney sent me this poem, it really speaks a heart mom's heart.

The Day I Became a Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved her for so long.

I will not give up on this child.
I will listen to your advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will she need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I will accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns her wings,
I run to my child's bed.
I watch her sleep for quite a while.
I bend down and kiss her head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.

And yet, I trust you hold her life, and guide us through each day.
My mind says savor each moment she's here,
but my heart begs, "PLEASE let her stay"!

From pacing the surgical waiting room, to sitting by her bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will she be alright?", to watching her reach out her hands.
With every smile my heart just melts, despite life's harsh demands.

For all who see that faded line.
I look to them and smile.
You see my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to her beautiful heart).
God must have known how much I'd love her (Just as He loved her from the start).

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for her (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".