After 28 nights in two different hospitals, it felt really good to be home. Luke has only spent 3 of his 8 weeks at home! Leaving the hospital, Rog and I experienced mixed emotions. Excitement and relief to be free from bells and buzzers and tubes and wires, but apprehension about managing Luke's care without the help of such wonderful doctors and nurses. We have been trained on how to run Luke's feeding pump, check placement of his NG tube, give medicine and so on, but it is still a little daunting to be on our own. I know that each day will bring more confidence for us to care for this amazing little boy.
Since Luke developed reflux, we also came home with a wedge for him to sleep and feed on. Although he looks a little silly in his wedge, if it keeps the food down, we love it! Our plan is to alternately breastfeed Luke and feed him through his NG tube. He will get a 30 calorie per ounce formula through his tube (breast milk is only 20 calories/ounce).
We started with a syringe pump (used most commonly for IV medication) and he started with getting 50 cc's over a 1 hour period. That's not even 2 ounces and it was hit or miss whether he could keep it down. We watched that syringe empty and prayed that Luke's stomach would hold it. Before and after surgery he had such a hard time putting on ounces. We had rented a hospital scale, so were daily monitoring his progress, or lack thereof. Coming home from the hospital at the beginning of March, Luke weighed in at 6 pounds 12 ounces and it took two weeks for that scale to move upwards at all.
At our first follow-up appointment with Dr. Stefanelli, he convinced us to rent a different pump that could hold more formula and could be programmed for a longer period of time. He really wanted us to stop doing 3 individual feedings through the night and instead give Luke a continuous drip for 10 hours overnight. This would give him the maximum amount of calories, but more important, us all some decent sleep. This new Infinity pump changed everything! With being fed all night, Luke slowly started gaining weight and we didn't have to change the pump out while we were stumbling around in the middle of the night. We propped Luke in his wedge in between us as we slept and Luke slept soundly all night. Rog and I only woke up if the hose got kinked and the pump's alarm went off. Thank you, Dr. S.!!! You are so wise =)
As much as we would have loved to bring Luke home without a feeding tube, it really was a blessing in several ways. One, the sleep factor as I mentioned; two, it was much easier to administer ALL his medication. We could give him his meds through the tube while he was sleeping. He came home on 8 medications (Diuril, Lasix, Reglan, Zantac, Simethicone, Spironolactone, Captopril and Tylenol), so the tube was definitely our friend! The third blessing we experienced (and me especially as the breastfeeding Mom) was the pressure-reliever of knowing he was going to get all his calories, whether he breastfed well or not. I can't say that I simply enjoyed our feeding time together, I did watch the clock and I did worry if he didn't eat very long, but those feelings were definitely softened by knowing he would get enough through the tube.
Roger took another full week off of school when we got home, to help me and Luke get into a rhythm of our days. (Small sidenote: My husband is the most incredible partner. Thank you, Lord, for the gift of a devoted, hands-on, strong, faithful husband.) We didn't go very far when we got home, the Starbucks drive-thru was pretty much the extent of our family outings. =) We were vigilant about keeping Luke healthy post-surgery and pretty much hunkered down besides our doctor's appointments in Tacoma. We didn't mind too much, though. We were home.