"Sometimes," said Pooh, "the smallest things take up the most room in your heart."

Sunday, November 7, 2010

She may not know she's a preemie, but her body does

36 days old/days in NICU
Weight: 3 lbs 9 oz ( +20 grams)*
*30 grams=1 ounce


Check out my new tab called "A Month of Thanks". Every day in the month of November, I'll have a new thing I'm thankful for in honor of Thanksgiving this month!

Today had a lot of ups and downs. The GOOD news is that today we got to start the breastfeeding  protocol today with Ella. The breastfeeding protocol is this: if she breastfeeds 0-5 minutes, she gets a full feeding through her tube, if she breastfeeds 5-10 minutes she gets a half feeding through her tube and if she breastfeeds 10+ minutes, she gets NO feeding through her tube! At 5:00 PM, she nursed for 14 minutes so she got her first FULL FEEDING from just breastfeeding! Very exciting! I can still only breastfeed 4 times a day and I'm guessing it'll stay that way until her O2 needs come down, but it's still really exciting. This is a HUGE HUGE milestone in the NICU. It's a step towards being able to start breastfeeding on demand! I spent all of Sunday at the NICU. We did some talking today and we're down to the final weeks. My due date is almost 5 weeks away, which means that Ella could be home in probably 3-5 weeks. So we decided that Monday-Friday, I would spend the night at the NICU to be with Ella and to work on breastfeeding. It was a really hard decision to make to be away from Olivia that much but I have two children who need me and right now, the greatest need is from Ella. The more I'm there, the more she gets to practice breastfeeding and the sooner she comes home. I'll still come home in the afternoons and spend that time with Olivia and Shane will be with her in the mornings. It's just the decision that made most sense and worked best with our family. A minor thing we realized is that it will actually save us a little bit in gas too, which will help a TON. We are spending a ghastly amount on gas going back and forth so much to the hospital so this will definitely help a little. 

I found out that the doctor can still hear Ella's heart murmur sometimes. The way the doctor described it is that there are two kinds of heart murmurs essentially. There is the one that Ella had, where the duct was opening and unoxygenated blood was able to make it to her lungs (which is what occurred ThatNight she got SO SICK). The other one, the doctor told me that because babies chests are so thin and their heart is right there, they can often hear a murmur that isn't a problem. I know, that was a terrible description but since I'm not a doctor, and I'm trying to describe it as basically as possible, I don't really know how else to describe it! HA! Just know that there's a "bad" one and a "not-so-bad" one. They don't know which one it is, which is what really freaks me out. Her doctor says that usually, if it's the "bad" one (which she had before), there will be other indications such as extra need for O2, blood pressure problems, her heart rate may drop or rise a lot...stuff that all happened before. Of course, we all know that Ella has had a need for extra O2 lately and she is currently on 1.5 liters of pressure. However, today, her need for O2 has been mostly in the 40's, as opposed to the high 50's-60's like it had been. The way they would find out for sure is to perform an echocardiogram, which is the test that they performed That Night she was so sick. That was what told them what they needed to know That Night and what saved her. Her doctor told me today that she doesn't appear to be sick and that an echocardiogram is something that costs thousands upon thousands of dollars to perform. He said that since she doesn't appear to be sick, they try not to perform the echocardiogram. However, if Ella starts showing any other symptoms or needs more O2 or gets worse in any way, they will perform it. 

They also did some labs today and discovered that everything is okay, except she appears to be more anemic. The doctor checked with the blood bank and they don't have anymore of the blood that Ella received in her first 3 transfusions. He is hesitant to introduce a new donor to her, even though the risks involved with transfusions are actually very low but also because if he gives her another blood transfusion, it will essentially stop her body from naturally continuing to produce more red blood cells on it's own from her bone marrow. He said that based on how her body is starting to produce it's own red blood cells, he thought that she'd be able to bring hermatocrit (the level of red blood cells in the blood) levels up on her own. 

So needless to say, after all of this, I kind of freaked out today. I relived That Night when Ella was so incredibly sick and I lost it while talking to the doctor. I started crying and at one point I told the nurse that I just couldn't deal with that happening again (of course I WOULD deal with it). I am so scared of her getting that sick again. The doctor reassured me that if it was the duct ("bad" murmur), Ella is much bigger and stronger then she was and shouldn't get that sick again. Plus, they are aware of what happened before and are keeping very close tabs on it. Of course, that doesn't stop the absolute terror that is clenching my heart. I want to tell them to do the echocardiogram and who gives a flying monkey about the cost (Which I actually half jokingly said to the doctor)! We have medical insurance for a reason right?! So, anyways, that's something we'll be keeping a close eye on. 


2 comments:

  1. oh hun! *HUGS* it's all SUCH a rollercoaster, isn't it!? i hope things get figured out soon. i seriously remember being in this exact position - thinking, he's come so far so why all the worry and issues right NOW!? - but of course it was over sooner than i thought it would be, thank goodness. i get the same sort of feeling for you. i'm praying for you guys!

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  2. Well, so much for the roller coaster ride called your life! I think within a month your life will be much smoother. All this drama will be resolved one way or another. Perhaps you can cling that that? Sounds kinda Polly-anna, but there is your mental health to think of, too! HUGS!!!!! Love you guys!

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