This is a normal issue for preemies. In utero, they would be getting all the nutrients they needed through amniotic fluid, including tons of protein. They cannot give her straight protein because she can't process it, so the best thing is her to get it through breast milk. With her surgery then partial blockage, she has gotten really behind on her feeds, so she is not getting enough. I did not know that protein was important for how your body handled fluids (apparently it is). Here is a basic description:
Low protein levels in the blood can cause edema. The proteins help to hold salt and water inside the blood vessels so fluid does not leak out into the tissues. If a blood protein, called albumin, gets too low, fluid is retained and edema occurs. - www.drugs.com/healthguide
They are not cavalier about it, but they do not get overly concerned unless they think her lungs are being affected. They gave her a diuretic on Saturday, but they have to be careful to make sure they do not give her too much because it can then affect her bone health. Literally every treatment with these babies have some sort of alternate consequence and the doctors continuously have to perform a balancing act. They said the best thing for her is to get more food than IV fluids into her, so they have been aggressively upping her food every day. So far is has been going well and she gets a little less puffy everyday.
It seems like this is going to work though we had a scary moment yesterday when they upped her feeds and she was laying on me for about 10 minutes when she must of spit up a little. Now I did not think I ever paid much attention to the feel of her breathing before, but I did notice when her little body got completely still on me. By the time I looked up at her monitor, it was starting to alarm like crazy and her face was turning blue. The nurse came in and whisked her off of me and gave a pretty convincing act that all was cool. After a couple of minutes back in her bed with her spit up cleaned up, she was fine again. We have to remember that she still cannot perform multiple functions at once and when she throws/spits up her whole little system gets caught up. They realized that she was not going to be able to handle the larger feed over the short amount of time and they lengthened it so she got it over an hour instead of 30 minutes. Unfortunately, that is her only way of telling us she couldn't handle the food, but she was really ok within a couple of minutes. Jimmy was in the city that day for his CFA class and I automatically went to call him right away, but then realized it would do nothing but stress him out and she really was fine. I have to admit I sat frozen in my chair for a good 5 minutes before I felt calm enough. Everything probably happened and was resolved within about 2 minutes, but it felt much longer than that. After that her numbers were better than they had been all day so I felt much better though the nurse admitted later that night that Natalie did scare her there for a sec. These nurses truly are amazing.
Today brings another week which brings in a new doctor for the next five days. I had my own doctors appointment in the morning, so got in late and missed rounds. However, it sounds like between the bloating and some minor other issues she is having, that it could point towards her heart needing to be addressed soon instead of waiting to see if it closes on her own. She is still breathing well so it is by no means an emergency, but I think in the next few days they will take a serious look at whether to do the ligation or whether we will continue to wait and see. Her surgeon is back from vacation and was happy in general with her progress. He plans on doing the reconnection surgery in the next two to three weeks. As much as I do not want to see her go through more procedures, I am almost rooting for them to decide to do the ligation because I hope it will resolve some of her lingering problems and have her as healthy as possible for her surgery, but we will have to see what happens this week.
As for me, I went to my doctor today to get cleared for work. I was also hoping to find out the great mystery of why Natalie was born so early. It sounds like there are signs towards a couple of different possibilities but not one definite reason. Basically, he said we will just have to make a game plan when we want to have another child (I kind of felt like it was just a different version of wait and see, but am quickly understanding there is not much black and white answers in the medical world). I am cleared to go back to work next Monday which will be really hard, but it is important to make sure I have enough time with her when she comes home and I know I will be happy I did it in the long run.
I don't proofread these anymore because I am just too tired, so I hope they are not littered with typos and grammatical errors! Hopefully we will know more about her heart situation by Wednesday/Thursday and I will be sure to let you all know. Keep Miss Natalie in your prayers, she has a long road left to go and we could use all the help we can get for our wee warrior.
And here is our girl:
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