Day 15 Post-Norwood - Friday, December 19, 2008

"I lift up my eyes to the hills—

where does my help come from?

My help comes from the LORD,

the Maker of heaven and earth.

He will not let your foot slip

he who watches over you will not slumber;
indeed, he who watches over Israel

will neither slumber nor sleep.
The LORD watches over you,

the LORD is your shade at your right hand;
the sun will not harm you by day,

nor the moon by night.
The LORD will keep you from all harm

he will watch over your life;
the LORD will watch over your coming and going

both now and forevermore."
Psalm 121

Yesterday was a bit of a slower day as far as Tyson's progress. He had spent a lot of time awake on Wednesday so he was very sleepy on Thursday. As a result, he didn't feed well and he ended up with more food in the Ng tube than taken orally. Two of the nurses have mentioned to me that Tyson's feeding is basically what is holding us here. Once he learns to eat well and we are confident that he is gaining as expected, we can go home. We have been praying hard that Tyson learns to eat well, and I must admit I am a little surprised at his slow learning when it comes to eating....of course I keep comparing him to my other three babies who all seemed to be good eaters right from the start. I have to remember that everything requires more energy for Tyson and that he is going to be a bit of a slower eater. (Slower than Merrick? Oh oh!)

Overall though, he appears to be a very happy baby, very content between feeds and falls asleep easily on his own. He spends a fair amount of time awake after each feeding, and goes right back to sleep after his nighttime feedings. He really only cries when he's hungry, which isn't very often since he gets fed every 3 hours right now and I think we wake him up before he has a chance to realize he is hungry. At doctor's rounds this morning I asked if we could go to more of a "demand feed" routine during the day and a stricter schedule at nights, since we seem to be waking him before he even realizes he is hungry and I think that is why he isn't too interested in the bottle. They have supported my request and we are "allowed" to give him more time to wake on his own during the day, as long as it isn't too much more than 3 1/2 - 4 hours between feeds. Especially since his whole feeding regime takes 45-60 minutes, is he really ready to eat again 2 hours later?

He also seems to throw up a fair bit, not just average baby spitting up. Cardiac babies are more susceptible to reflux, so I try to feed him more upright instead of laying down, and I lay him on his right side after feeding so that he can digest his food better. I spoke about that this morning too with the doctors on rounds and they want to put him on a reflux medication to see if this helps, and if he can show himself to feed well in the next few days, they may think about pulling his Ng tube to challenge him. Sometimes the Ng tube causes reflux so this may aggravate the issue. They are not increasing his portagen volume per feed, (because sometimes increasing the volume just increases the reflux problems.) However, they can increase his caloric intake by changing the "formula" of portagen. He still has to take in a certain amount of fluid per day so as long as he takes in enough fluids, we can stay on a "demand feed" routine during the day.

I probably won't be updating the blog every day anymore, it will depend on what progress there is to report. I didn't get to update the blog yesterday at all because it was a pretty busy day. In the morning Melanie and Jaidynn, Tanya and Kate, and my daughter Kenya came for a visit. Kenya is such a goof, she finally got to see her mommy and she spent the whole time being very sucky and whiny. She is only two afterall, and this is taking a toll on her too. Then Leo and Joni came later in the afternoon and Joni got to help the nurse changing the plugs on Tyson's PICC line. This is a sterile procedure so Joni got all decked out in hospital gown and all. Thanks Aunt Jones! Later in the evening my parents came and were tickled pink to get to hold their grandson.

Depending on how the weather goes, Brian and the other three kids are coming down to spend the weekend here with us. Tyson's case social worker arranged to get a complimentary room at the Delta Hotel right across the road from Sick Kids for Friday, Saturday and Sunday night so that the family can be together for the weekend. The boys are excited to finally get to see their little brother again and I am looking forward to us being together again. The hotel has a pool and there are a number of things for kids to do here at the hospital so it should be pretty fun. Brian is spending the nights at the hotel with all three kids (brave guy!) and I am spending the nights here with Tyson. We will be attending Toronto church on Sunday to celebrate Lord's Supper there.

So that's the update for today! Hopefully the demand feed routine will work out better for Tyson and he will show more interest in the bottle. Although this issue seems small in comparison to what he has already been through, we ask that you keep this issue in your prayers too. The sooner he learns to eat well, the sooner we can go home! The doctors talk about a discharge date of "sometime next week." I hope Tyson can eat well and we can go home without an Ng tube. This will be one less thing for me to worry about, especially with three other little ones at home.

Thank you all so much for your prayers and support. Brian and I can really feel that we are being carried through this ordeal in God's Almighty hand, and the prayers of righteous men ARE powerful and effective! Please continue to remember the needs of our family in your prayers.

Take care,

Mel:)