To give you a bit of a brief history, when Regina was born, they immediately shoved an NG tube down her throat because her blood sugars were dangerously low and they claimed she wouldn’t take a bottle (I was still unconscious and being sewed back up post C section). While she was in the NICU, she would take a soothie paci fine, and actually breastfed pretty well. She would refuse to nurse past 5 or 10 minutes, but she nursed. The NICU nurses would give her bottles, but she wouldn’t take more than 30 mLs. A full feed was 60. So, we came home with the NG tube and a feeding pump.
A NG tube is a tube that goes into her nose, down her throat and esophagus, and into her stomach. To insert it, you take the NG tube and thread it down into her belly, starting in her nostril. Then, you have to use a stethoscope to listen to her stomach while you shoot a puff of air into her NG tube using a syringe. If you can hear the whoosh of air, you’re good to go. If you can’t, you better reinsert the tube because it’s either in her lungs or curled up in her throat. Feeding her lungs would be extremely bad. Then, you tape the tube to her face so that she can’t pull it out. It slides out really easily. I have to replace the tape every couple days when it gets dirty or starts coming off and we have to replace the tube every 2-3 weeks. Her feeding pump is upstairs in our room by her play mat and rock n play. It has a feeding bag that we fill with breastmilk fortified with Similac for extra calories and also a pump that pushes the milk through her NG. I type into the pump the volume and the rate at which it should pump and then run it to feed her. Whenever I travel with it, it clogs without fail and won’t pump the feed. A helpful Instagram follower said I should try flushing the line before we leave to prevent clogs, which is brilliant and I feel quite silly for not realizing that earlier. We do four bolus feeds a day and run it continuously at night, stopping once to replace the milk and give her her heart medication. I must say, giving her meds through the tube is super easy since I know it goes right into her stomach, but everything else about it is a huge pain in the arse. Lots to offer up! But I know she would have starved without it and she is gaining really well for a heart baby, so the NG and I have a love/hate relationship. It’s complicated.
Once we got home, she started refusing to take the bottle altogether. Then, she started gagging at the breast. And finally, she started gagging on the paci. That’s when I knew she was developing an oral aversion and something had to be done about it. I pushed for a feeding therapist. The feeding therapist confirmed that she had an oral aversion and said I was right for trusting my gut and bringing her in. The question is why did she deteriorate so fast once she got home? The feeding therapist and the cardiologist’s theory is that first of all, eating is really hard for her as she goes into heart failure. I have heard several people surmise that she must be too lazy to eat. That is not the case at all. Feeding for a baby with a severe heart defect is the equivalent of running a marathon for us. She is already burning calories just trying to keep her heart pumping, and she works very hard to breathe since her lungs are filled with too much fluid. You have to suspend breathing in order to eat, and that can be too much for her. Why bother trying to get her to eat at all then? Well, if she doesn’t use her mouth at all for six months, it is going to be extremely difficult for us to get her to re-learn how to eat again after her open heart surgery. I’m not expecting her to take full feeds by mouth before her surgery with feeding therapy, I just want her to practice what she needs to be doing so that she will have a foundation for us to build upon after surgery and we won’t have to be overcoming a total oral aversion if we don’t have to. Their second theory is that the NICU pushed feeding by mouth too hard and now she has negative associations with feeding in general. I know that that was not their intent at all, and that instead they were just trying to get her to slowly build up to full feeds so that she could be discharged like your typical NICU baby, but this is Regina’s world and we’re just living in it.
The other major issue that the feeding therapist believes she has with feeding is that a little while after she got home, she started retching and throwing up every time she had to poop. The physical therapist thinks it is because when she bears down, it pushes everything back up. The pediatrician said that this is normal for babies with Down syndrome and low tone in their digestive systems. But nobody seems concerned about it but me and the feeding therapist. The feeding therapist figures that she is not going to be inclined to eat if she spends her days gagging and retching every time she has a bowel movement. I’m inclined to agree. I’m definitely going to bring it up with her GI doctor to see if we can find some sort of solution. The poor baby is so miserable every time it happens.
In other news, her older sisters are doing well. No one has gotten sick, praise the Lord. If they did, I would probably have to ship them off to my mom’s house. Ruth is at an awkward age where she was too young for kindergarten (September baby), but I didn’t want to send her to Pre K and risk her bringing home germs to our medically fragile baby, but she is going stir crazy. So, we signed her up for piano lessons. The girl loves music (Little Einsteins is her favorite show) and can already play a few tunes on her toy keyboard and can recognize and identify a piano, violin, guitar, or flute playing when she hears them. I wanted the girls to learn music anyway, and they say 4-5 years is a good age to introduce it. She is so excited. Rose is a sweetie and has been very helpful with Regina. She is very earnest with her prayers, and likes to draw pictures of Jesus and Mary because “they are a part of our family.” I get so choked up when she says that. Thank you, post partum emotions. Wren is a total clown and keeps us all in stitches. Yesterday at dinner, she asked me where her fork had gone. I was searching all around the table for it, when I see her pull it out from under her placemat with a flourish and proclaim, “here it is!!” Apparently, her sisters had all seen her hide it there and they all thought it was the funniest thing ever. Rhea is something else. She rules our house with an iron fist. She thinks she is a little mama. I see her stroking Ruth’s back one minute when Ruth is being quiet, and the next Rhea is screaming “No!” at her if she thinks she’s out of line. She clearly has no idea what a little squirt she is.
Regina has a big cardiology appointment coming up that will probably determine when she has open heart surgery and how complicated that surgery will be, so prayers will be appreciated. Also, prayers that she eventually learns to eat solely by mouth and that she will not need a G tube (one that goes straight into her stomach from the outside of her belly that would mean another surgery) would be great. And lastly, prayers that she doesn’t get sick.
I don’t know what the future holds for Regina, but I’m trying to remember what Tolkien says in The Fellowship of the Ring, “The future, good or ill, was not forgotten, but ceased to have any power over the present.”
I hope you all are having a spiritually fruitful Lent.