Tuesday, October 26, 2004

Little T's coming home!!

We're very excited because Little T's most likely coming home on Friday!!!! Well, as long as his blood pressure stays low enough. He's going to continue to need medical care at home. We're going to take care of his Broviac, give him 5 different medications at home, wrap and unwrap the bandage on his arm and give him massage and range-of-motion exercises. He will also get his blood tested twice a week at the Hematology clinic and will continue to receive transfusions as needed on an out-patient basis. He's down to about 1 transfusion twice a week now.

With all the medical care he needs, we're also scared. C is most scared about his Broviac, because it's a central line down to his heart and he has to open it every day and flush Heparin down it. I'm more scared about how I'm going to take care of him with all he needs and Special K. He's going to have a lot of doctors' appointments and physical therapy. Right now he gets fed every 2 hours 24 hours a day due to his reflux and nausea.

Special K burst into tears when we told her Little T was coming home, and expresses unhappiness whenever his homecoming is mentioned. OTOH at home, she'll finally get to do all the things we told her a big sister can do, like hold her baby brother, dress him and give him a bottle. I'm also scared that something will happen, and he'll have to go back to the hospital again. I know it'll all be okay in the end, and somehow we'll manage, but right now we're anticipating and waiting, and we don't yet have the joy of having him home.

So having said how much work he is, let me tell you some great things about my little boy. He's almost 6 weeks old and already is his own little man. He's very strong in spirit and body. His heart has always handled the big extra load that his condition and all the transfusions put on him. So he must have a big heart. He has a tough grip and good head control for a baby of his age. He's usually very calm, and gazes at you intently in a way several nurses have said is "very engaging." Few things bother him and he gets a lot of unpleasant stuff done to him. For example, he doesn't cry if he gets his Interferon shot and sleeps through it if he's asleep. But if he has a dirty diaper, or is hungry, you get about 30 seconds to fix it before he starts crying loudly. My friend Jenny gave me his horoscope today and according to that, he's a Virgo, so perfection is important to him.

So that's my update, which I know is briefer than usual, but we still have a lot of little errands to do before he gets home and I have to go pump now.

Wednesday, October 20, 2004

Flu shot shortage

You know in any other year, the flu shot shortage wouldn’t bother me much. I mean sure, it’s nasty to get the flu, but I’d just hope for the best. Unfortunately this is very bad timing for us. The drugs that Little T needs to take suppress his immune system. In addition he’s still pretty fragile and of course he’s too young to get the flu shot anyway. So C K and I all need to get the flu shot. And our medical group had ordered flu shots from Chiron and now they have none and are scrambling to get shots from other places. We went to a flu clinic at Safeway last week and it was crazy. They had 200 flu shots and there were over 300 people there in a long long line that snaked around the the frozen foods aisle, the bakery and deli. A lot of elderly people who could barely stand, let alone wait in a line for hours were sitting on upside-down crates that the manager had brought out for them. I heard on the news that a lady died from waiting in line to get the flu shot.

Monday, October 18, 2004

NICU Update on Little T

Little T continues to improve slowly. His arm is now down to 17cm. And on Thursday to Sunday he went for almost 3 days without needing any blood transfusions!! Hooray!! They've also reduced his CBC blood tests to once a day. He still has a ways to go before he can go home. For one thing he receives 7 different medications around the clock, and 3 more as needed, and some of them like the steroids require a weaning process. But at least now we can see the light at the end of the tunnel.

His arm is wrapped for four hours and unwrapped for 1 hour.

And now that he's more stable, we have a more normal issue to work on. Little T is a very poor eater. Every three hours, he's supposed to eat 70ml (2.33 oz) of breast milk heavily fortified with formula powder, because he gets a lot of fluid from his transfusions and medications. However he only drinks about 30ml (1oz) from a bottle on average and at most about 60ml. So he gets a lot of it down his feeding tube.

He's usually very mellow and content, but he has a short fuse when it comes to eating. You get about a minute to feed him and then he starts screaming very loudly.

His newest neonatologist who just came on today wants to start him with on demand feeding with a minimum of 280ml per shift (12 hours) with no feeding tube. I agree in principle, but I'm nervous about it. This boy is skinny! Not skinny like Special K. I mean really skinny. His right arm is bandy with no fat and his back is wrinkly because it has no fat. He has a slight double chin and his belly is round, but half the time it's from gas. I know they won't let him starve, but still I worry.

On Wednesday I finally got to breastfeed him again and he finally calmed down and did well. On Friday night I discovered that he had given me thrush. Ouch! So we've stopped breastfeeding until it gets better. Thrush also has made my supply go down. I hope it goes up again once I get better!!

Monday, October 11, 2004

Little T gets a night primary nurse

C went to the NICU with my brother. Little T's night nurse who had been looking after him for 5 nights in a row said she wanted to be his primary nurse, because "he's so engaging when he's awake." That means a lot, because even though of course all the babies there require around the clock care, Torin requires a lot more hands-on nursing than the average baby there. Most of the babies who are there long enough to get a primary nurse, are frankly too premature to protest much at anything. They get 1 or 2 medications and don't have this arm that has to be wrapped and unwrapped. He's also a month old now and has gas or colic or whatever it is that makes babies extremely fussy at times. They can and do give him Ativan if they can't console him, but they do seem to try to comfort him first.

Clarity goes home from the NICU

Clarity the baby who's been across from Little T his whole stay finally went home. She's almost 3 months old and has been in the NICU pretty much since birth. She got transferred to Stanford the same day he was born. I was really happy for them, but also really jealous. Maybe that's why Little T had a hard time breastfeeding that day. We also learned something from them. Clarity was ready to go home early last week, but her family couldn't take her home. The hospital wouldn't release her without nursing care at night and at first the insurance company refused to provide it. I expect we'll face something similar, because Little T will probably require a lot of physical therapy for his arm and our HMO has a limit of 60 days after injury.

Sunday, October 10, 2004

Little T's first breastfeed

Little T really breastfed for the first time. He drained my breast! I've only fed him on one side so far due to his arm. Before then he'd just take a few sips and then stop. Then on Monday he wouldn't nurse at all, just screamed and screamed. Finally I gave him a pacifier and he promptly fell sound asleep. I felt weird and sad that he preferred a pacifier over me, but that's what he's used to right now. And on Tuesday the nurse didn't read his feeding plan that said I come in at 10:30 to breastfed him and fed him at 9:30 so he was too full to try and breastfeed. ARgh! But he also drained his bottle, which he hasn't done since he went on Interferon! Hooray!