God has a plan for me, and it is good. It’s something I’m really struggling with putting into motion, but He has been SO gracious to allow me the time to sit here and focus on Him while Littlest is in the hospital; and to really “own” that His goodness extends to everything in my life, not just the easy or fun stuff.
Littlest is currently in the hospital waiting on getting a fundoplication and gtube. The fundoplication is a wrapping of the upper part of the stomach around the esophagus to address the emesis and reflux issues he has with eating. The gtube is to give him supplemental feeds because he doesn’t have the strength and ability to eat as much as he needs on his own.
He has lost almost four pounds since October, resulting in this hospital stay and being diagnosed with failure to thrive. That combined with some of the other symptoms/complications has pointed the Dr. here to diagnosing Littlest with chronic lung disease (CLD). The scary thing with the CLD is that he isn’t really a classic case. He wasn’t preemie, he wasn’t on a ventilator for a long period at birth (three non-concurrent days over two weeks), and while he did have an upper lobe lung collapse in November, it was quickly addressed and there is no scarring. The CLD seems to be neurogenic, which means it will be very difficult for him to outgrow. *Most* children who are diagnosed with CLD outgrow it at some point; so we will just wait and pray.
It seems like every week is a new “worse” diagnosis for us. It has been a definite roller coaster of emotions, and each hospital stay is more difficult for me to deal with. I’ve had to come to grips that I may lose my baby in the next 10 years, and it’s no longer the far out “if things get worse.” Things *are* worse. There are things being affected in his body that are life and death things like heart and lungs. I am not being morbid; I’m just realizing that God has THIS PLAN for me and Joel and Oldest and Quietest and Littlest, and WE CAN LIVE THROUGH IT. We may each only have days, or weeks, or months or years. We don’t know… Littlest could outlive us all! I praise God for His faithfulness, and for His reminders in bringing me those true friends who support me and encourage me and cry and hug, who face the reality with me but aren’t afraid to be optimistic and point me to God even when it’s HARD and PAINFUL.
Everyone of us walks a knife’s edge between life and death, we are just not always aware of it.
Please keep us in your prayers, that we would have peace that passes understanding as we we make decisions that are going to affect Mac for his entire life, and also, that He would give the other two kiddos comfort as once again our family is split apart in various directions.
Our pastor came by and shared Psalm 63 with me today:
A Psalm of David, when he was in the wilderness of Judah.
1 O God, you are my God; earnestly I seek you;
my soul thirsts for you;
my flesh faints for you,
as in a dry and weary land where there is no water.
2 So I have looked upon you in the sanctuary,
beholding your power and glory.
3 Because your steadfast love is better than life,
my lips will praise you.
4 So I will bless you as long as I live;
in yourname I willlift up my hands.
5 My soul will be satisfied as with fat and rich food,
and my mouth will praise you with joyful lips,
6 when I remember you upon my bed,
and meditate on you in the watches of the night;
7 for you have been my help,
and in the shadow of your wings I will sing for joy.
8 My soul clings to you;
your right handupholds me.
9 But those who seek to destroy my life
shall go down into the depths of the earth;
10 they shall be given over to the power of the sword;
they shall be a portion for jackals.
11 But the king shall rejoice in God;
all who swear by him shall exult,
for the mouths ofliars will be stopped.
I stumbled upon your blog via my sister’s FB, you both worked at the ATI headquarters, and I do not think we have met!
Mac reminds me so much of my son and I think that you guys are doing an amazing job. My heart aches thinking of what Mac and your family has been through. I keep longing into my sister FB account to see the newest update to know how to pray! We pray for you every night when we put our little 10 month old to bed, I tell him that we are praying for our friend Michael who is sick. You all have been on my heart non stop lately and just wanted to let you know that you are in our prayers and that God has you on amazing journey and that you have touched our lives in an awesome way!