Wednesday, August 25, 2010

What a day this has been, what a rare mood I'm in...

It has been a wonderful day and I'm on cloud 9! I'm trying to take it all in and ignore the part of my mind that is telling me that it has not all proven to be successful. Well, I'm going for it!

I started out with a pediatric dr. appointment for Calvin. This was not necessarily positive. The dr. did not impress me and was someone who did not individualize my son and work with HIM. She also said "they have large tongues" (something I'm sick of hearing). Well, who are we then? Us without Ds? I know I have a large tongue because it's usually hanging out of my mouth, and the dentist did say I have something going on with my tongue that he's never seen before (nothing that we figured out though). Anyways, the same dentist, Dr. Laughlin, said that Calvin's tongue is fine and did not think it was too large for him. Another myth and generalization. I wonder what people with Ds would say to generalize us?? Also, I asked about the feedings and my determination to get Cal on breast milk. She took no responsibility and told me to talk to the dietician from the NICU. Well, I'll be searching for a dr. who will treat Cal as an individual and will get me answers. I'll get back to that later.

After that appointment, Auntie Katie (who so graciously drove so I could pump, and held Calvin and entertained me and the nurses, and so on) and I went and had lunch at Culver's and had to get to United in less than 30 minutes. I told her to drive efficiently, she told the nurse on me and said I told her to drive fast! ;) Don't tell Katie, but that is what I mostly meant - okay, she'll know when she reads this! When we got to United, we had a chest x-ray done and saw Dr. Sutton, the cardiologist. Another dr. was in there to observe and listen. I love that, because they are taking the opportunity to learn. "Use us to learn!" Things still look pretty good. The x-ray shows and enlarged heart still and one other thing I don't remember but I think about the lungs. However, these things were supposedly better than the last x-ray, so Dr. Sutton was not concerned. I asked if that would look "normal" before surgery and he said probably not. I really like Dr. Sutton. I trust him and he treats Calvin as an individual and is willing to work through things. I told him about my desire to get Cal on breast milk. (No luck talking with a dietician from Children's - left a message after 3 transfers). He said that since everything looks good and Calvin had the tube in his throat during the study, to try thin liquids! He said "we can always go back to what we were doing". Yay!!!

Calvin was up in weight to 8.25 lbs and 20.5 inches. Both are 50th percentile for his age on the Down syndrome growth chart. This was determined at the heart clinic because when this was done in Hudson, the pediatrician said he was in the 10th percentile. I asked her if that was on the Ds chart and she said "No, we don't have that". What?! That is ridiculous, that should not be the case. This was another reason I was not impressed with the dr. visit. I know some of you may think I'm being too harsh or picky. I'm not. I HAVE to be Cal's advocate and I do not believe the medical community knows everything. God knows everything, I do know that!

Okay, back to the day. For Cal's 6pm feeding, I gave him 2 ounces of thin liquids and he sucked it down just fine and maintained his latch. I did put him in a football hold because the slowest nipple was still fast and his eyes got large when he was trying to handle all the food. He seemed relaxed on his side. (He has also taken a liking to a certain nipple, for the MAM bottle) He is doing wonderfully sucking. When we went to the dentist yesterday, he did much better! He also kept the pacifier in his mouth for 15 minutes of the drive today. I realize I have more to say that I'm capable of coordinating right now, and I apologize. I hope you're following along, if not, sorry.

After the dentist visit yesterday, I called a nutritionist, Karen Hurd. The dental office referred me to her to help with figuring out the feedings and how to thicken breast milk. What I found out from her was pretty amazing. We had a phone consultation tonight at 6:40pm. I spent 85.00 and it was worth every penny. She said to thicken breast milk with 100% natural psyllium. 1/4 tsp for 5 ounces would make it honey consistency. However, we agreed not to do that yet and we'll consider it if Cal's feedings drop or it seems he's aspirating. She figured out he needs 20+ ounces of breast milk per day (I'm pumping about 48). She did this by figuring out all the amount of fat, carbs, protein, and H20 that he needs. She also told me that cow's milk can contribute to aspirating. So, I'm supposed to avoid it, AND that is what formula is made of. Hence, the formula could have been contributing to the aspirating!! I do need to ask her how that is so, and I will. I just have had a very busy day, as you can tell since you're reading a book. Well, we are now going to be feeding Calvin about 3 ounces of breast milk per feeding (7 feedings) and we'll see how he does with getting that in AND gaining weight. Time has yet to tell how successful this will be.

Karen also said that a reason he might not have eaten much in the NICU is because he was fearful of the whole situation. She said that sometimes not enough credit is given to little babies.

Karen said she thinks we're doing the right thing and to keep working with Dr. Laughlin. No problem there! I pray that I'm helping Cal the best way possible. God bless.

1 comment:

  1. It's 4am, I've been up since 2:30 feeding and pumping. A little update on the feedings: Cal has taken in 2 ounces per feeding. I wish the nipple on the bottle was slower. He did really well last evening but this last feeding seemed to overwhelm him a bit more. I'm considering getting the thickener for that reason, then it would help IF there is aspiration - which I'm not seeing signs for, but who knows...I'm thrilled with the 2 ounces but it's not enough for just 7 feedings. I might also have to wake him more - but that could backfire if it makes him more sleepy during feeds. What a deal, who'd have thought feeding a baby would be so complicated. If he'd nurse it would be easier to control, but a harder process for him right now. I think as he gets bigger and stronger (and can breathe better - fixed heart) he will be able to do it without as much work on both of our ends.