There is a Johnson & Johnson commercial that I see about 10 times a day that says it all - a baby changes everything.....as if we didn't already know this, the days to follow were what I imagine most new moms experience when their babies come home for the first time - multiplied by ten. Gabriel still had his NG (feeding) tube and was only eating about 50% of his feedings orally. We were to continue the strict feeding schedule of the NICU - every three hours day and night. Since Gabriel takes his time eating, this would equate to 30-45 minutes per feed. So by the time he was finished eating, we had about 2 hours until it started all over again. Begin parental sleep deprivation.
He was also on an apnea monitor that alarmed with the most irritating noise in the world...it was supposed to alarm when Gabriel had high heart rate, low heart rate, and/or low respiratory rate. The reality was much different. It NEVER alarmed for any of those reasons. It would alarm because his leads came off, or he squirmed around and the stickers were touching, or the battery was low, or the recording space was low, or a million other ridiculous reasons. And not during the day....this machine somehow knew when it was 2am. Deleriousness ensues.
The oxygen was the final piece to the "keep Gabriel alive with medical equipment" puzzle. It was also the easiest, comparatively speaking. The components include a giant in-home tank, 50 feet of oxygen tubing and bandaids called tender grips that kept the cannula in place. There was also a portable unit, refillable using the home unit that gave 12 hours of freedom from the house - not that we ever used it. Mostly we went out only for appointments - 2 or 3 a week. For the first time in my life, I find it VERY hard to make it to said appointments on time. This seems ridiculous since my soul job at this time is to care for Gabriel and make his appointments on time....HOWEVER, take into account the following - First and foremost, appointments are scheduled around feedings. Thirty to forty-five minutes after his feeding, he is able to go into the car seat. Fill portable oxygen. Take him back out of his car seat because he threw up on it. Change clothes. Mini-bath. Back into the car seat. Apnea monitor alarming. Change leads and reset the monitor. Fill diaper bag. Gone are the days of hopping in the car to run an errand. It takes a moving truck just to get us where we need to go... Luckily the doctors give me a little pass since he is so high maintenance - thank goodness he is so cute!
Some great news is that Gabriel is exceeding the expectations of all of his doctors. His weight gain is phenomenal. At discharge, Gabriel weighed 7lbs, 11 oz. Today, he weighs 12lbs, 6 oz! His pulmonologist was so impressed overall that he allowed us to skip the 3am feeding! Additionally, although I was prepared to BEG Dr. Tsangaris to discontinue the use of the apnea monitor, I didn't have to. Right away, he knew that it was no longer necessary and wrote the DC order....happpy dance. From that point on, my ridiculousness due to sleep deprivation diminished, because I was able to have 3 to 4 hours of sleep at night! Cue Trent's happy dance.
In early October, my co-workers threw a shower for Gabriel at our house. The three ladies in charge (Sarah, Terry and Susan) transformed my house into the perfect hosting house, brought wine, sangria and mimosas, cooked a full down-home lunch and arranged the whole shower. It was a fun and relaxing day, and at one point Trent turned to me and said, "You work with some great people". I couldn't agree more. The generosity and love we felt was overwhelming.
A few weeks later in October was our anniversary. Trent had something up his sleeve for a while before I finally dragged it out of him. He told me one night over dinner (via a hangman game) that he had booked a non-refundable three hour dinner cruise on Lake Michigan overlooking the city of Chicago....two days, two nights. All the mothers reading this blog probably just gasped. I know I did when he first told me I would be spending two nights away from my very high risk baby....but I love my husband and he was just so excited about this trip that he had planned by himself to the last little detail. So I didn't show my absolute fear and maternal anxiety about leaving at all and just hugged him and thanked him. But immediately after dinner I put in a call to my parents, to make sure they would be here and to ease my nerves, even just a little.
When the weekend came, I reluctantly left Gabriel with my parents at our house with a counter full of notes, numbers, and information. I called as much as they would tolerate, just to hear, "He's doing great". Once we got on the boat that evening, I was happy we were there together, on a date, just us. For a few days, we weren't constantly worried about medical equipment, feeding times, vomit, poop, inhalers, or prescriptions. We got to focus on each other and remember how much fun we have just hanging out and being near each other as people.
Another huge adjustment for me when Gabriel came home was temperature related. Everyone knows I have metabolic issues. Additionally I am cheap. Usually during the fall, the furnace does not run. Period. Then when the winter comes, the thermostat is set at 60-62 degrees. I love Trent, but last year I was able to tell him to put on a sweatshirt or get a blanket to keep warm. This year, I turned the heat on the day Gabriel came home, with the temperature never to be less than 68 degrees. We even got new windows for the kitchen and Gabriel's room. Like I said, "Having a baby changes everything." Totally worth it.
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