This is a part of a series I am doing on my son’s cleft lip. I hope these posts reach someone who is embarking on their own cleft lip journey, looking for hope, and more of what to expect.
After Eric was born, the pediatrician and Jacob (aka the King) took Eric to the NICU for his first feeding. I was relieved to have an empty, quiet room and I ordered a TON of food. After I had my big ol’ burger, milkshake, cookies, and french fries, I was moved to postpartum and was given a thick folder full of pamphlets for cleft lips.
I didn’t look at it until we got home, but I wish I had because I was given a check list of things that needed to happen before we left the hospital. It was a LONG list. And it was exhausting. If I had read the list I would have been a little more prepared for the influx of people visiting my room. My room was literally a revolving door. One person walked out, the next walked in. It was nuts. I had slept so poorly two nights in a row, gave birth, and was taking so much in. At one point, I just turned my back to the door and closed my eyes. I was exhausted on so many levels, I literally just shut down. I don’t think I’ve ever done that before. I remember thinking to myself, “I am just going to lay here, close my eyes and pretend I can’t hear anything.” Eventually I fell asleep to the sound of Jacob handling all of our visitors.
One of the plus sides of not being able to breast feed!
Here’s the list… Brace yourself.
Part 1: Admission
1. Ask Pediatrician for a Neonatology Consult
- I don’t know if this happened or not, but I did see the pediatrician and the resident pediatrician 3 times after Eric was born.
2. Speech Therapy Consult
- Yes, seriously, speech therapy for a brand spankin’ newborn. I asked, in so many words, what a speech therapist did with a new born. Feedings, mostly. She visited my room three times and each time was just to check on us. She was there less than 5 minutes each time she visited. She gave us one feeding tip which wasn’t working for us. Jacob had already fed Eric and it went really well. Eric had some trouble after the first feeding, but we got it figured out. You want to know how much she charged for those 3 visits? $780.00! Outrageous.
3. Case Management Notification
- We did have a case manager come to our room and explain that she would help me make my appointments, and I am not entirely sure what else. She visited with us for a few minutes and I never heard from her again. That’s fine by me. I have two appointments. One with the surgeon, one with the pediatrician. I can handle that. I can see how this would be helpful if we had appointments with an ENT and other therapists, but again, Eric’s cleft lip doesn’t seem to be causing any other problems right now.
4. Social Services Consult
- I wish I had known that a social services consult was just protocol. The social services lady walked in and I was embarrassed! I wondered who thought I needed social services to come in my room. Thankfully my dad was there and talked with her. I remember my dad talking about how far the surgeries have come, these run in our family, yada, yada, yada. Pretty much my dad let the social services lady know this isn’t anything we haven’t seen before and we’re totally on top of it. She also gave me a xerox copy of all the pamphlets I had already been given. It was a ton of paper that went right into the recycling bin when I got home.
5. Initiate Feeding with Pigeon Feeder
- I am not sure what a pigeon feeder is, but the Dr. Brown bottle for cleft lips worked great. On the surface it looks like a normal Dr. Brown bottle, but it has an extra piece called a dam to filter air bubbles out. The top of the bottle is also half hard and half soft. The hard part should push up against the roof the the mouth. Eric can’t make a full suction and the bottle works great. He does swallow extra air, and we have to burp him pretty often. *SIDE NOTE: I was told not even a minute after Eric was born that I wouldn’t be able to breast feed. It’s generally not recommended to breast feed a cleft lip baby anyways. For whatever reason, the surgeon has the final say in the matter. After the surgeon examined Eric he said I could try feeding him however I wanted. So I tried a lot of different things, but Eric could only drink out of the Dr. Brown bottle for cleft lips until after his surgery.
6. Give family Cleft Palate packet
- Got it. Twice.
7. Laction Consultant
- Eeerrggghh. This was annoying. The lady came into my room and brought with her a BOAT LOAD of pumping stuff, all of which was charged to my room with out asking if I even wanted it. She just opened it up and started hooking it all up. Then I sat there for 15 minutes with this machine and suction cups. It was really unproductive, and by unproductive, I mean I could have milked myself faster than this machine. She never came back to my room and I left all that pumping stuff there.
8. Feed ad lib volumes, on demand at least every three hours.
- Eric had one big feeding with Jacob in the NICU after he was born and didn’t eat again for 18 hours after that! The nurses checked is blood sugar every once in a while and everything was fine, but he just wouldn’t wake up at all. Finally he was eating regularly again. So no, the three hour thing didn’t happen.
Part 2: Discharge
1. Schedule appointment with surgeon prior to discharge.
- The pediatrician has a surgeon they refer all babies with cleft lips/palates to. The pediatric resident came in and took pictures to send the the surgeon. A receptionist from the surgeon’s office called me before I left the hospital. We had his appointment a week later.
2. Speech Therapy outpatient appointment to be scheduled prior to discharge.
- This didn’t happen. I don’t think we need it anyways. Not if three, five minute sessions adds up to $780.00. No way.
3. Discharge patient with at least 2 specialty bottles.
- We did leave with two bottles. One of them is bigger with a faster flow. At first I thought I would have liked two of the same little slow-flow bottles, but now that Eric is drinking more I am glad I don’t have to go find a new one.
I was discharged after 24 hours but stayed at the hospital in my room with Eric. Eric had to stay longer for observation. We left the next morning and had a super awkward conversation with the man wheeling me out to our car. He asked, “Who would want a baby? Not me, I’d be trying to get rid of one…” Jacob and I just laughed awkwardly. I would have walked out, but I may have accidentally taken two Norco in a row and I was SO dizzy and I hadn’t eaten real food in 12 hours. Only the snacky type stuff from the fridge at the hospital. Once I was discharged, the nurses couldn’t give me medicine anymore and I was so tired I couldn’t remember if I had already taken one… and you’re supposed to take Norco on a full belly. Whoops.
The next week we had Eric’s first appointment with the surgeon. Probably one of the more awkward appointments I’ve been to.