We brought Kiran home from the hospital early Sunday afternoon, but not before I had the opportunity to see what it looks like when his lips turn blue! Two nurses were in the room, checking him over, and I saw his face turn ashen and his lips turn blue. His saturation levels dipped into the 40’s. I was panicked and saying – he’s blue – his lips are blue! – as the nurses calmly watched him.
It felt like a year, but I am sure it was just ten seconds – and then we heard him fill his pants. His color came back, his saturation level popped back up … His mom’s heart slowed.
It was terrifying, but I am glad it happened when and where it did. I am glad I am now confident I will KNOW when his lips are blue (I was constantly questioning it, but it is clear when it happens). And it hasn’t happened again, like that, since we have been home. Whew.
We did come home with an NG tube, and we were faithfully doing our thing with it – Kiran had other plans. First of all, it became difficult to follow his cues, because we were dumping in the full amount every time. He was having tummy issues. He had a huge fit on Sunday night. He had had a few in the hospital, right around the same time – his new witching hour – but he was inconsolable. He got his hands free and very deliberately yanked the tube out of his nose.
We were able to calm him after that. We decided to give him a break. Sure, he’d only been taking in 20-40 ml by mouth each bottle with the tube in, but maybe he’s telling us something. He immediately started taking in 55-75 ml per bottle. Less than his normal amount (around 90 ml), but he was making up for most of it with added frequency.
We gave him the last couple of days, this mama watching his intake like a hawk, to take in what he could. He made it within 50-75 ml of his normal daily intake. Both the pediatrician and cardiologist felt it was enough and we should let him be. Sure enough, it seems we are heading back to normal. His last four bottles have been 90 ml by mouth! Kiran knows what he wants!
Through this whole process with the NG tube, I have been worried. For whatever reason, the feeding stuff causes me more stress than about anything else. Maybe because I can (kinda) control it – though not really – have you ever tried to force a baby to eat by mouth? Still, it seems more within my control than any of his other medical things.
So I worried. I worried when it was in – he’s not used to being forced to eat 90 ml every 3 hours – he’s been on his own schedule for the past couple months. I worried about his tummy. I worried the whole time it was in that he would pull it out. I have so much anxiety around that, because it is so traumatizing (for me, more so than him) to put it back in. And, of course, when he pulled it out, I worried about his intake. Would he lose weight? Would he get dehydrated? Would the doctors disagree with our strategy – would we have to fight for him?
Ultimately, Kiran is teaching me to trust him. I quieted my fears over the last couple of days. I fed him more often, I made sure he took in enough to not be dehydrated (he always took in way more than enough)…I allowed him to be a normal sick kid. Maybe he lost an ounce or two. I haven’t checked. But he has been calmer without the NG. And he is getting back to his normal, all on his own, on day three.
In the last two days, his pediatrician saw him, a home health nurse saw him (though our regular nurse is on vacation), and his cardiologist in town saw him. Everyone said he is looking good. Lungs are clear, no fever, just still working to get over the stuffiness and cough.
Our cardiologist was impressed how quickly he bounced back from this viral infection. He feels it was a test Kiran passed. It shows him that he is still strong; we are not at surgery time just yet. In fact, he said he feels we likely have a few more months before he will need surgery. Obviously this could change, but it was so good to hear that!
It has been exhausting and overwhelming the last few days at home. I have basically gotten nothing done aside from caring for Kiran. I have barely taken care of myself (I know, I know, but as any mom will tell you, when your sick baby needs you….)
But after a Facebook venting – and after my mom came over and cleared out my dishes and Kiran finally napped in his crib for a bit so I could power fold laundry – I feel a lot more in control. It is unfortunate that the state of my house really does mess with my psychological well-being.
Regardless, I do realize how lucky I am. I have a house to get messy. I have food to eat to make dishes dirty. I have clothes to wear to contribute to giant piles on the floor. And I have this baby to snuggle, forcing me to smartly prioritize and let the house be a disaster for a bit.