Greetings Rainiacs Friday, April 4, marked 19 weeks (133 days) on the outside for Rain. We have been a little lax on the updates lately. Mostly because we have been trying to figure out exactly what was going on with Rain and her feeds. As many of you already know, the last 5 or 6 weeks have been very frustrating for us. After what seemed like a good start to the feeding process, Rain quickly ran into problems and couldnt consistently get through her bottle feeds. The rule is she has to finish all of her bottle feeds for three days before she can come home. Usually, once the bottles are introduced, it takes one or two weeks to reach this goal. This just hasnt happened for Rain yet. The most frustrating part of the station was the inconsistency of the level of feeds she could handle. One day she would do well, finishing many of her feeds, then the next day she would eat almost nothing from the bottle. The doctors thought maybe she was getting to tired out (because of the lung issues) so they limited her to half feeds from the bottle in hopes she would work her way up to consistent feeds. She continued to be inconsistent and have problems. The frustrations continued. While this was happening the doctors weened her off of her diarrhetic and steroid treatment thinking that she was mature enough to handle life without them. Shortly after this, she began to sleep too much. I know a sleeping baby sounds like a good thing, but we needed her to be awake to try for bottle feeding to give her more practice. Again. Incredibly frustrating. Not only were we not making progress, but we seemed to be going backwards. It was weeks of trial and error and slight tweaks. With every nurse and doctor and occupational therapist coming up with theories. Feed her sitting up or dont move her at all when she is feeding or use this type of nipple for the first half of the feed and when she gets tired switch to this nipple. She just needs time to get in shape or she is very fussy or all the stars and planets have to align for her to want to feed. And the entire time we were given the same time frame. She should be home in one to two weeks. And every week or two that went by with no results was maddeningly frustrating. Throughout all of it, Valerie was the one who was most in tune with Rain. As soon as Rain began sleeping too much, Valerie was the one who picked up on it. After a fair amount of pushing form her, the doctors started up the diarrhetic and steroid again. So, 5 and a half to 6 weeks later, Rain is back on those meds and has been waking up for her feeds. Good news, but frustrating because it seems like we went in a big circle to get to this point. Also, Valerie refused to believe that, everything had to line up perfectly for Rain to want to feed. It seemed like she was often eager to feed, but when given the bottle, just wouldnt do it for long. But then, some random days, she would feed really well. After one night of good feeds, Valerie realized that she had pumped at the hospital and left fresh unfrozen milk for Rain for those feedings. We started to think back to the days when Rain had better feeds, and valerie figured out that most of those days she had left fresh unfrozen milk for her. So, we went to our huge stash of freezer milk and grabbed a bunch of random bottles. After we defrosted them we discovered that they smelled (and probably tasted) pretty bad. We talked to the the doctor, and it turns out that smell comes from a digestive enzyme in womens breast milk. It is still perfectly healthy and digestible, but it just doesnt smell or taste good. Now the doctors and our OT are on a mission to find out why that is so prevalent in Valeries milk and is it happening to others. (most studies done on breast milk are on full term babies so our OT is contacting places the specialize in preemie breast milk to see what is going on. i.e., do early births produce more? does that enzyme actually not stop working unless frozen at an extreme temp?, etc.) And we have learned that some of the other babies that have left the hospital already are also not thrilled with frozen breast milk. all we know is that we dont want this happening to other babies!!! (and yes, now we have to figure out what will happen to all those thousands of ounces.) So, On April 1st, we made a change in Rains diet. No more frozen milk. Only fresh stuff. SInce that time she has shown a dramatic improvement in her feeds. The whole feeding experience is different. It no longer takes the planets to align for her to feed. She generally just feeds if she is awake. She still has lung problems, so we are working towards all bottle feeds every day. And we realize this may take some time to get to that point. But now, the difference is, we are actually making progress towards that goal. It honesty feels like we are only a couple of weeks from that happening! So, if its not too much trouble, how about one more blast of good vibes form the Rainiacs to push us over the hump. Hopefully, in the next couple of weeks or so, there will be an update that says she is home. And that will be one sweet ass update to write. Team Struski PS _ I know its a lot of photos. But its been a while :-)
Posted on: Sat, 05 Apr 2014 19:09:25 +0000
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