NO MAS!

He is tiny but he is mighty! Just a little wisdom I picked up watching Beverly Hills Chihuahua with my kids. He came off oxygen yesterday afternoon and was still off it when we left tonight! He has just held onto oxygen for so long. I am so happy to see more of his beautiful face. Hope he can keep up his awesomeness and not go back on oxygen. He is doing okay with his bottle feeds but still having a lot of trouble with what seems to be reflux. He doesn't spit up though, just had dips in his heart rate. We hope he will grow out of this. He weighs a whopping 4 lb 10 oz! He's like the Chihuahua of the baby world:)

Roller-Coaster

We've had a few more rough days. However, one of my primary nurses thought of some things to try that seem so far to have been very helpful -- gaining weight and eating better with less bradycardia. He was taken off of the feeding tube on Sunday and had a terrible two days with lots of breathing and heart rate issues. He also came off caffeine which was supposed to help with that. He was taking all of his feeds (from a bottle) but only because he had to. He was groggy and exhausted and he didn't gain any weight. So this morning she put the feeding tube back in and he gained 35 grams tonight. He was also breathing better and they decided to take him off his oxygen for a try tonight. I didn't take a picture of him without the feeding tube up his nose and that is fine because it's back. I was going to wait and get a picture of the oxygen off but I decided to wait and make sure it is permanent. I'm relieved they are slowing feeding down a little because he wasn't enjoying eating. Who knew eating took so much energy. Maybe Christian should eat that huge bowl of ice cream he just scooped himself with more intensity and he can burn a few calories while he is shoveling it down:)

Hold on

Well, it's been a long week and there will probably be quite a few more. They only took Duncan off oxygen supplement for a short time and it didn't work. He is still on oxygen and his need doesn't seem to be lessening. He is getting exhausted from his feeds and lost 10 grams last night and gained 10 tonight. He is in the less than 10th percentile (for weight) and I am realizing that he will have to grow and improve a lot before he can graduate. I am back to feeling completely useless at his bedside and feeling guilty I can't be there more. What a roller coaster. I miss my Primary nurses they haven't been able to be there in the CCN (most likely because they are awesome and are needed for sicker babies). It was great to have primary nurses when Duncan was sick but not that I've been there for 9 weeks I'm totally over new nurses that don't know anything about your baby. You start to feel lonely. P.S. I am probably just tired and tomorrow I will have a new outlook. Sure love that baby.

Get Ready!

We've been going back and forth to and from the NICU for 9 weeks now and today we got one step closer to the end of that part of Duncan's life. They took him completely off oxygen and moved him to the CCN. The CCN is the continuing care nursery where babies get ready to go home. I'm not ready. Isn't that funny, after 9 weeks you would think I would be ready. It is scary because we've had the security of monitors and nurses and soon we will get to bring that fragile little baby home. He is 4 lb 2 oz and still a little unsure about his bottle feeding. He will still be at the hospital until he can get the bottle thing down (and hopefully the nursing thing as well). I don't know how long that will all take but he has been progressing faster than I expected after his first attempts with the bottle. There are always setbacks as well. Maybe I am just afraid that he really won't come home soon and that's what I'm not ready for. He sure is a precious beautiful baby. The pictures are a bath he had today and his move to his new home. It's been a long 9 weeks and the journey has still just begun!

Cutie Pie

I just had to add these pictures from last week that I didn't get a chance to put on the blog.

Big changes

I thought moving to the Intermediate care area would be exciting, but the big changes came later as Duncan has really progressed. He has been growing like a weed and had surpassed 4 lbs. That means he has doubled his birth weight! He had a second eye exam and the Opthamologist said his eyes are perfect and he will not need to be checked again in the hospital. He also has moved from a bed into what they call a crib (it looks more like a cart to me). This means he is old enough and big enough to maintain his temperature without working to hard. He has moved way down on his breathing settings and may be coming to the end of needing supplimental oxygen! The biggest and best change is that he can take a whole feed through his bottle! Once a day or more he can take a bottle. He started slow but has taken his whole feed two days in a row. He also nursed last night for 15 minutes like an old pro. Things have really just clicked with him and he had the added bonus of a nurse who really knows what he needs and how to care for him. He is on the road to coming home. I can almost taste it! I sure love that beautiful baby!

Leftovers

Here is a picture of the baby after some attempts with the bottle. He gets so excited that I have to take it out to help him breathe. I couldn't take a picture of me holding the bottle and noone else was around so this is the best I can do. He can take about half his feed with the bottle until he gets too tired. He does it once a day. Once he gets stronger and more coordinated with the breathing he will do it more. He got moved to I pod today. It is the less intensive unit and means he needs less support. It wasn't a pleasant experience for me but Christian said it was fine. The baby next to him cried for the hour and a half I was there and Duncan was awake scared looking and breathing fast. At least he is still in the isolette. He will come out of there once he makes it to 1800 grams and seems to be maintaining his temperature. He is 1720 grams which is 3 lb 13 oz now and 16.25 inches long. He's precious.

Milk

So I was driving home from the hospital today and I realized I am a total milk-aholic. I love milk. I had a little carton from the hospital on the way home and I tried to make it last because I loved it so much. I'm crazy (had two glasses of milk since I got home, no lie). The reason I mention it is because my special baby and I have the love of milk in common it seems because he had his first bottle today and he drank 18 ccs!! He got the rest through his feeding tube. He keeps this up and he might be getting a new home! He was so exhausted by the end of the 18 ccs that he was breathing less as he drank the bottle, but it was his first try so let's pray he gets more coordinated and can do the whole bottle and breath as well! He weighs 3 lb 11 oz and gained 10 grams today. What fun being a Mom! Is there a better job?

Care Conference

Amy here. I helped give Duncan a sponge bath today and took this picture of the nurse helping me dry his hair and afterwards with that cute concerned look. Also we had a Care Conference today (meeting with doctor, nurse practitioner, social worker, nurse). Top three things I learned at the care conference: Duncan should never smoke; Amy should get more sleep; Amy should eat more ice cream. (I promise the doctor said those things!) Christian will report on the other important things we learned. --Thank you, Amy, for that kind introduction. The doctor reported that the clot in his brain has gotten smaller. We keep praying it will continue to do so without blocking off the opening to his spinal cord, which is very unlikely. His lungs are developing slower than they'd like. He could have chronic lung disease-- they'll evaluate that later. The good news is that if he has it, they say it's not necessarily permanent, because the lungs replace the sacs (alvioli?) every couple years. Hence, the instruction to avoid smoking. You can be sure that I will be very careful not to give him any cigarettes. He'll have to make due with an occasional pinch of chewing tobacco for the time being. Also, news on his heart: the doc says he will not need surgery on the PDA (patent ductus arteriosis)! The hole in his heart had gotten smaller (I don't think they've done an echo cardiogram in a while.) the last time they looked. He still has a murmur and they may do another echo before he leaves the hospital if they think it's needed. They say he'll need to stay away from people for a long time. No animals, no dust, no malls, no bug spray, no grocery stores. I fear he'll start dressing in a brown robe, go bald, begin to chant harmoniosly, and start making wine. Amy might join him. I got to hold him on my chest tonight (kangaroo). He did pretty well, but my belly is big and my breast bone is bony, so I don't think it's very comfortable for him.

Nice hair

This morning the doctor said that Duncan no longer has to go back to CPAP unless he needs it. Now he's on nasal canula full-time and has been on room air (21%) the whole time. He had his hair washed today, so it's sticking up kind of fuzzy. He's so cute.