What a journey!
We’ve been home for almost two months now. Thats two months of sleepless nights, dirty diapers, sterilizing bottles, singing lullabies, and cleaning up vomit. And we Praise God for it ALL!
Overall Emilie has done very well. She now weighs 10lbs 10 ounces. Every day she’s growing more alert. Just within the last week her baby talk has increased significantly. We can’t say a word to her without her cutting us off. She’s gaining more and more head, neck, and back control. She’s begun to reach out and grab things. Her leg action is strong and steady, kicking anything that comes across her path. Every morning she wakes up with the brightest smile like she’s glad to be alive. She sleeps hard and plays often. Developmentally she’s on track for her gestational age, and for that we give Him praise!
Emilie has six doctors that she’s sees monthly: a primary pediatrician for her regular care, a high risk neonatologist who monitors her growth and development, an occupational therapist who assesses her motor skills, a gastroenterologist who evaluates her nutritional needs, a neurologist who monitors brain growth, and a neurosurgeon who oversees the proper functioning of her shunt. Not to mention she attends a five hour sleep study every six weeks. As you can see Emilie already has us running her around on a very busy schedule.
Emilie is not the worlds greatest eater. In fact, if she had it her way she probably would not eat at all. This has been the one struggle for Holly and I. We know all too well that a baby’s growth and development hinges on their getting enough nutrition. Emilie should be eating between 3 to 4 ounces six times a day. However she’s eating closer to 1 to 2 ounces six times a day. When feeding her we’ve been very intentional to not force her, lest she develop nipple aversion. Yet it pains us to know that she needs more and there is nothing we can do. Her gastroenterologist says that her nutritional consumption is not all bad, though she is at the low end of the spectrum. He doesn’t feel a g-tube is necessary at this point, however he is closely monitoring her. We’ve tried different nipples, bottles, feeding positions and even feeding times yet nothing seems to make a difference. Next week we’ll be trying a non-dairy formula to see if that helps. But even still, our resolve is to yet again trust that God is working it all out for her good.
Indeed this has been a journey. Our faith has not wavered. There are too many promises in God’s word and He is too good for us to believe anything other than what He has promised. And as with any journey in life, there are highs and lows, and even moments of protests. But if you remain steadfast and diligent, not letting go of His hand, He will see you through.
Philippians 1:6 “being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.”