Ever since my son, Gavin, was born and spent some time in the NICU, we have had excellent care by both the doctors and nurses who have worked with him (for the most part). The medical professionals who we've spoken to have been informative, supportive, and encouraging. However, I have still learned to ask a lot of questions. A ton of questions, to be exact. The doctors and nurses who work with our kids and perform procedures on them have been through the routine many, many times. Sometimes, they forget to tell us things - not out of negligence or disinterest, but simply because they've been through it, and they know what to expect. I, on the other hand, am never prepared because I've never done this before.
This never rang more true than when Gavin had his palate surgery at 1 year and 4 months old. At that point, we had been through two other surgeries related to his cleft and procedure when he had to have ear tubes put it. As always, we met with the doctor and nurse one week before his surgery to discuss what would be done, how long it would take, and what to expect. We were told that Gavin could have nothing but liquids for six weeks while his palate healed. After that, we could slowly start adding soft solids (applesauce and mashed potatoes) for the next two weeks and continue building up his meal selection from there. Since he was much older than the average age that palate surgeries are performed we had already started feeding him regular solid foods, and we were told he would be upset about his new liquid diet.
So, when he immediately made the baby sign language sign for "eat" after his surgery we were prepared. We were prepared not to eat in front of him (although this took a lot of strategy and cost my husband and I at least ten pounds a piece). Before the surgery, I had brainstormed a list of liquid options that I could offer him: chocolate milk, milk shakes, smoothies, juice, etc. So, if I made something and he didn't like it, I was prepared to offer him something else.
The palate surgery went well, the overnight stay at the hospital went as well as it could have, and we were released later the next afternoon after we got him to drink a little. We knew he wouldn't be overly hungry right away (considering the pain meds he was on and the soreness in his mouth), but what we weren't prepared for was him refusing to drink anything at all. We offered him a variety of drink choices, and he wanted none of it. We tried giving him liquids through a syringe thinking that his mouth was still too sore for a cup. But, he still wouldn't drink.
Since we were released on a Friday, and our follow-up appointment wasn't until Monday, we felt a little like we were on our own. After almost an entire day of him not wanting to drink, we had to force him to drink something - anything. It was either that or take him to the hospital so they could give him an IV and get some fluids into him. I'll never forget laying him on the floor, pinning his arms down with my knees, and holding the top of his head so that we could squirt some chocolate milk into his mouth. And we didn't have to do it just once. Finally, by the time Sunday night rolled around, we were exhausted, but he was finally willing to drink a little bit for us once in awhile. The entire time I worried: I worried that I was traumatizing him; I worried that he would lose too much weight; I worried that he would become dehydrated; I worried that the lack of nutrition would affect his growth; I worried that he would wake up starving in the middle of the night and miserable.
On Monday, we went to our post-surgical appointment, and I told the nurse about how hard it was to get him to drink anything. Her response: That's completely normal. So, I spent the entire weekend stressed out and crying over something that was normal - to be expected. But, no one ever told us this before or immediately following the surgery - so how were we supposed to know. I don't blame the medical staff for not telling us - they probably forget simply because it was "completely normal." They knew what to expect, but I didn't.
Now I know to ask exactly what to expect following his surgeries - to ask a lot of questions and a lot more follow-up questions. And, you'd better believe that I'll be paging the on-call doctor if I'm not sure.
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