Another exhausting chunk of time at the hospital

I dropped Special K off at L and S's house and spent another exhausting chunk of time at the hospital. It's amazing to me how draining it can be when on the surface it appears that I'm just sitting around and sometimes talking. However as with almost anything to do with Little T, it's not that simple. He had 2 apts today. The first was with GI (gastroenterology) and the second with Hematology. Poor Little T fell asleep every time we waited, but only once protested when he got woken up.

Little T fell asleep in the car on the way over. He got woken up to be weighed. But he didn't protest much. Well, no more than he usually does at being weighed. Perhaps he was stunned at his weight gain of 6.3 kg. I thought this couldn't be right. He weighed 5.9 last Tuesday, and a 400 g increase would be incredible for a baby whose greatest weekly weight gain had been 150g. And I was partially right. More on that later. Little T was also measured at 58.5cm. He's grown an entire cm in a month, which sadly is a great leap from zero growth last month. His head has grown from 43.4 to 45cm. His head's always grown from month to month, giving me hope that the steroids haven't completely ruined his brain. Keep up that head growth!

Then I met with a GI nurse practioner. She immediately asked for little T to be reweighed. His new weight was 6.25kg. He peed in his diaper in the five minutes since he was last weighed, so I suppose that accounts for the .05 kg difference. Then I had to recount his entire medical history concerning GI issues. He's had reflux since birth. It's sad to think that this was Special K's biggest medical issue as a baby and for Little T, it's an issue so minor that it's taken us 8 months and it getting worse for us to be able to deal with it.

Here's his GI background in not so medical terms. We put an NG tube down him 6 weeks ago due to poor weight gain. A week after the NG tube, he started vomiting after every feeding. Being the cheerful guy he is, he only fusses a little, then you can hear his stomach heave and the vomit projects outward. Then he often smiles. What a relief! He doesn't mind that his clothes are now drenched in vomit, but he's outraged that I change his outfit.

Unfortunately he also stopped eating and breastfeeding cold turkey. My hormones went crazy and I tried pumping for a while. The vomiting and lack of eating upsets C and me in a primal way. Baby vomit, no food, very bad, very bad. One day after Little T had vomited 3 times in a row and covered a sofa cushion in puke, I sobbed uncontrollably. I felt so helpless and stupid that I couldn't feed my own baby. I hadn't been so sad since his days in the hospital. His petechiae, nausea, puffy face and other horrible side effects are awful, but don't reduce me to tears. Every animal knows that vomiting is bad. I was convinced that he was losing weight, but it turned out that he was in fact gaining weight, slowly at first, but then 50-100g per week. So now we have a baby who gets all his nutrition via formula poured down a tube that goes through his nose into his stomach. And I struggled for two long months to breastfeed him.

The NP then immediately put my back up by suggesting he was "overfed". His weight to height ratio was in the 91st percentile and she said "he looks fat". I pointed out to her that his weight today was one data point in time. He's usually weighed on a different scale, different time of day, etc and this weight just didn't seem right. She reacted huffily that the scale had to be accurate. I didn't get into a debate about calibration and the differences in scales can be greater than Little T's small weight gain. I was sorely tempted.

Instead I moved on to the fact that Little T had just been taken off massive amounts of steroids last week. As you may know (though hopefully not from personal experience) steroids linger for a long time and steroids puff out your face. For months, Little T possessed the fattest little face, while his toothpick legs resembled a newborn's. It was painful sometimes, because people would remark how much he'd grow when it was only his face. I added that my daughter K would get pretty fat and then start growing.

And most importantly Little T only started gaining weight and growing after we started trying to give him 600 calories a day with the help of the NG tube. And trying means usually less than 600, but at least 500. The GI NP implied 600 calories might be too much. I said the nutrionist had said he needed at least 600 calories per day. The NP said the nutritionist might have made a mistake.

The official title of a nutritionist is registered dietician. To me, the word registered (except with the word nurse) conjures up a little accountant with a calculator. And indeed nutritionists calculate precisely how many calories you need based on weight, age and level of activity. Yes, of course it's based on assumptions, but isn't most human biology?

Months ago, Hematology had called in Grace the nutrionist. Grace calculated Little T needs 600 calories. PreNG tube, Little was primarily breastfeeding. Even so Grace noted the number of times he breastfed, calories per oz in breastmilk and how many oz the average baby breastfeed. And she gave me the number of calories per day he was eating. If I was an RD, I'd remember the precise number. What I do know is that it was 400 or so. I suppose showing a mother a number on a calculator is easier than saying "Your child isn't getting enough food from you." I was heartbroken. As I said before feeding is such a primal thing. So we struggled for over a month to get him to breastfeed more, eat more solids. He wouldn't. So we put down the NG tube. It was very difficult to have it go down and I cried about it.

Even now I wonder "Did I do the right thing?" And in my darkest moments I feel I made a horrible mistake. But then I repeat to myself this mantra: "Breastmilk is best. But getting enough food is even better."

Now this crazy woman was telling me he was overfed. I knew it was horribly wrong. I would not pull the NG tube. If you'd told me before Little T was born that I'd be fighting to keep a little tube that goes into his stomach in order to feed him formula, I'd said you were crazy. I felt crazy. I told her, I probably barked at her to go look at his medical records. The NP backed slowly out of the room and said she'd bring a nutritionist.

I calmed down by playing with Little T who laughed and smiled at me. I waited for 20 long minutes. As time passed I knew I had won. Then the attending doctor, the NP and another nutritionist walked in as a posse. Perhaps the NP had said I was "difficult." The nutritionist had her calculator. The attending discussed 4 different options including removing the tube, but said he wouldn't recommend it. I think removing the tube was mentioned to save face for the NP. The nutritionist said he needed 600-700 calories a day.

We talked more and decided that we'd increase the calories of his pumped night feeding to 400 calories and stop tube feeding Little T during the day to try to get him to eat again via mouth. Since he can only tolerate 40ml/hour on the pump and he sleeps about 10 hours at night, he can get a maximum of about 400ml. The current value of his formula was 24 cal/oz and we'd increase it to 26 cal/oz for 2-3 days and so on up to 30 cal/oz aka 1 cal/ml. Normal formula is 20cal/oz, so 30cal/oz must be very sludgy. In addition, we'd increase the amount of Prilosec he's getting. Then they'll see him again in 2-3 weeks to see how he was doing.

By this time I was pretty fried, so I had to ask a few times to get everything right. They gave a sheet for some blood test to look at his nutrition levels. I asked for an allergy test for milk since the increase of reflux also conincided with a huge increase in formula. The nutritionist and her calculator gave me precise numbers for exactly what Torin would need each night as we increased from 24 cal/oz to 30 cal/oz.

Then I walked across the street to Hematology. It was a little surreal. The waiting room wasn't crowded as usual with parents and grade school children. Instead five college teenagers sat there waiting for their friend Krista who had just been diagnosed with cancer. One kept repeating "It's weird weird weird." I kept agreeing in my mind, but not for the same reason. They said to each other how tired they were of waiting. I thought if only you knew how long I have sat here in this room waiting. Then they noticed Little T and oohed and ahhed over him. He soaked it all up and gave them big smiles.

Little T fell asleep. After the usual 20 minutes, M and a nurse in training came to draw his blood. I handed her the GI blood test sheet. She said she had to find the tubes for it. Wrong colour tube=wrong test. M and the training nurse pored over the book to find the tubes needed, then searched to find them. Another 20 minutes went by. Finally the training nurse drew what was a large amount of blood for a little guy. Little T smiled and laughed afterward.

Then I waited another 15 minutes for Little T's hematologist to arrive. I didn't mind, because she had kindly arranged to see him today instead of his usual time on Tuesday, so I didn't have to drive to the hospital twice in one week. She said his arm looked great. I told her about the 6.3 kg and she wanted to reweigh him.

Now Little T adores his hematologist. She can do anything to him and he'll smile. In fact he just smiled at her on the scale. A nurse commented that he usually screams on the scale. In fact this was the only time he's ever smiled on the scale. Weight of angel baby =6218.

His hematologist aka Little T's angel asked where Special K was. "With a friend" I replied. "She's easy to find babysitters for. It's Little T that's hard." She asked why. I said "I think people are afraid because of his medical issues." She very sweetly said she'd babysit if she wasn't working. Did I immediately gush and say "Thank you thank you!!! You're Little T's angel"? No, I was exhausted and said the first thing that came into my head "You're always working." a true, but poor response. She held Little T for a minute and oohed and ahhed over him. He gave her adoring smiles.

Then it was time to go home. Only 4 hours, so quick in hospital time. Little T and I got to sit in rush hour traffic. Fortunately Little T was exhausted and slept through it. I picked up Little K and talked to L a little bit about what happened. It was 6:45 by the time we got home. I had meant to get home earlier and bake the meatloaf for a hour. I put on the oven anyway. Then C came home and suggested we eat out and that's what we did.