Saturday, June 12, 2010
P.O.P.S.I.C.L.E stands for Parent Organized Partnerships Supporting Infants and Children Learning to Eat, and it is my latest find in support groups for special needs families (website here). I scoured the Popsicle Center's website and learned so much about eating that I never even realized. We don't have anywhere near the eating/feeding issues many of these moms have (and I pray we never do), but I signed up for their forum because I think I may be able to learn a lot from other moms of children with disabilities effecting their eating.
Many of you know that when Sadie came home from the hospital she was tube fed. Every 3 hours we put the tube in her nose, fed it down to her stomach and then shot a little puff of air through it while listening with a stethoscope to make sure it got to her tummy. Most people just leave a tube like this in instead of re-inserting it every feed, but I didn't want that tube/tape messing up my baby's face. And I think it was better for us to do it this way because I was more motivated to get her to nurse since I hated that tube so much!
This is the night we left the hospital.
The day we pulled Sadie's breathing tube, we watched the nurse stick his finger way down Sadie's throat and she didn't even react. No gag AT ALL. That first night was rough because she wouldn't swallow even her own saliva and everytime the nurse came in to feed her, we also had to suction her. At that point there was talk of setting up suction in our home so we could continue the care. By the next night Sadie seemed to be swallowing on her own and no longer needed suctioning. We were told (and we're still being told) that babies with HIE often will aspirate and end up back in the hospital with pneumonia, so we needed to really be listening to her lungs to make sure they were clear. They have been, and continue to be, clear, and for that we are truly thankful.
I so badly wanted to nurse my baby. I knew breastmilk was an important key to Sadie's health and was convinced that it was even helping her heal, but pumping was getting old, and I had looked forward to nursing so badly that I was heartbroken over the fact that my baby couldn't suck. I started putting the pacifier in her mouth and she would give it a few sucks amidst the biting and chewing on it, so I thought, "what if I just try to nurse her, I wonder what would happen?" Our hospice nurse had advised me against it because Sadie hadn't had a suck/swallow test...and again, she was worried about aspiration.
Of course I had no idea what I was doing, but sought some advice from people I knew who successfully breastfed their babies, and one night in the tub, with Brian there to encourage me, I got Sadie to suck!! I still remember being so happy I cried!! Then I immediately texted everyone I know to tell them the good news!
Sadie learning how to breastfeed.
From that point on we did more and more nursing until we completely stopped using the tube (I think it's somewhere under the bed with kitty teeth marks on it now...we should give it a proper burial). I didn't tell the nurse we had started breastfeeding until we were only using the tube for medicine, and by then she had checked Sadie's lungs a number of times and never heard any fluid (I was so nervous each time she would listen!). But Sadie wouldn't ever take a bottle. We tried and tried, but the same as with the pacifier...more biting and chewing than sucking. Oh well, she's nursing, right?
Now I'm starting to get a little concerned about Sadie not taking a bottle or a pacifier because I'm afraid she has an aversion to anything in her mouth that isn't boob and that when it's time to learn to drink from a sippy cup, or eat from a spoon we might run into problems. It's also hard for me that she won't take a bottle because I don't ever get a break. It might be easier if she didn't scream in the car because then I could go run my errands. As it is now, Brian gives me a couple hours on the weekends to do what I need to do, but if Sadie gets hungry, Brian has to use a syringe or a dropper to feed her. I'm sure it'd be much more satisfying for her to suck, even on a bottle.
Anyway, Sadie starts feeding therapy next week. We have an evaluation on Tuesday and I'm excited to see what the therapist does. Maybe there's a silly trick to get her to take a bottle, maybe it'll be a long process to overcome an aversion to anything in her mouth. I am still going to save the P.O.P.S.I.C.L.E. website...if for nothing else but to be reminded of how lucky we are.