12.13.14 - today began a NEW day. not just a great day, but an incredible one. 12-13-14: this date will only come once a century and one i will never forget.
for curiosity’s sake, i calculated how long its been. 719 days of incredible stress. i was surprised by how high the number was and even had to recalculate it, just to double check. yep, it was right. it has been 719 from when i began to bleed heavily at month 5 of pregnancy and began bedrest. when i birthed our baby by c-section, he and i struggled for life. i began to hemorrhage and they couldn’t stop it. at the same time, when they gave our sweet one O2 in the delivery room, his stomach, and not his lungs, inflated. something was seriously wrong. the surgeon told my husband that they didn’t know whether our baby would make it and she rushed into surgery. we both walked on the thin border of life while the emotional weight of it all laid heaviest on my husband who was cognizant of the stakes. God answered the prayers of many and my bleeding stopped the following day after much blood loss. baby was in the NICU for 31 days with multiple major surgeries, chest tubes, a million tubes coming out of his body... without being able to be held by the aching arms of mama or dada for so long. in his little life, he has had countless surgeries, xrays, MRIs, swallow studies, cerebral shunt placement surgery, drugs, drugs, and more drugs, a tight schedule for gtube feedings, 25 plus doctors and therapist visits all year long… and this brings us to today. upon seeing that 719 number, my bones and spirit concurred, “yes, THAT’S why you’re so tired.” ha!
why was yesterday incredible?
it was page one of a new chapter. for the first time in his life, we gave our sweet baby no medicine. for the first day ever, he had no food that was sent to us by our homecare medical supplies company, to be infused directly into his stomach by gastrostomy tube. this was day one where he got to eat real food and have real water. only. natural nutrition like God made us to eat, straight from our humble pantry, from my very own kitchen, made with mama’s hands. pinch me!
with our previous children, i never thought to even thank God for the privilege of being able to give food and water to them. this was a blessing that never crossed my mind ever even to count. it is now one that brings me tears now.
it’s ok that we still have to give him water by gtube. he needs time to learn how to drink after we had to cut him off from drinking at month 3. (i had never thought, too, that the skill of drinking is how babies stay alive and critical for survival!) the opening at his larynx is now gloriously healed by the Lord and i wonder how our little one sees things. maybe he thinks, boy, when one turns 18 months, they sure bring out a variety of foods and in larger quantities than a tablespoon at a time! he has no food aversion as with most with gtube dependence! the glory of God is upon him. HE LOVES FOOD.
i didn’t know there was ease in his previous formula regimen b/c his calories were predetermined by the formula recipe his dietician gave us. there is work involved to figure out how to get the equivalent of calories by real food vs. formula now. his small stature requires strict adherence to his daily calorie intake and we still have to give him a liter of liquids by gtube and slowly work to teach him to drink. (drinking isn’t among his favorite things….yet.) but i have hope that he will be dependent on his mouth fully for all is fluids one day. and that one day is coming when his gtube will be unused for about 6 months and he will be allowed to have it removed. Jesus reminds me that this is merely a season, that “endurance produces character, and character produces hope…” (Rom 5:4)
i truly believe that God healed him. and i’m not saying this in a way that kindly attributes all good things to God (which would be right to do!) i believe God actively healed him. the surgeon gave a poor prognosis for this kind of surgery. he expected to have to redo it in a few months. and for a baby who was diagnosed with reflux disease, little one has not been refluxing for the past 2 months and we did nothing to change this medically/surgically. The works of God have been displayed in him! (John 9:3)
i remember the tears pouring down my face often when i would go for walks with our baby. i would cry out to God out of incredible exhaustion and grief from all that our baby and we were suffering. he still has a serious brainstem condition and doctors don’t know why he isn’t growing well, but to be on this side of healing and experiencing deliverance from the Lord is still mind boggling for me. to no longer ask for prayer for God to heal his laryngeal cleft and for success with his surgery… because he is healed feels … foreign.
this is the best goodbye i’ve ever experienced yet. and i fall on my face in utter thanks to God.
(no kids' names request: if you leave a comment, please use only first initial of names. many thanks!!)