Sunday, May 8, 2011

Ilse's Progress

We talked to another doctor today at the NICU at Medical City.  He gave us so much more information than we got the other day.  He was incredibly nice also, taking as long to talk as we wanted, and he answered every question we had.  He said that if it was my blood sugar levels that caused Ilse's large heart and liver, it could have just been mild swings of blood sugar levels.  We'll know more after Monday.  If my test comes back negative, there are more tests that can be done on Ilse regarding how she metabolizes things.  I hope that there was something funny with my sugar levels so that nothing else is wrong with her. 

The doctor said her heart is fine and doesn't need anymore tests.  He said her liver will shrink and she will grow more to fit it; she comes off the jaundice light tonight at midnight and they will just watch her bilirubins from then on to make sure she doesn't need more phototherapy.  She does know how to suck, the doctor said, but since she is still having to make an effort to breathe, they aren't going to try to feed her yet with a bottle.  She is taking 40 ml every three hours.  The doctor had originally planned to go up on her feeds more quickly, but she started spitting up too much, so they have slowed down the increase.  He wants to get her up to 60 ml every three hours and off the 6 ml of IV fluids she is on.  I believe he said her blood sugar is regulated, stable, and normal, so they aren't having to tinker with it anymore. 

Ilse is doing incredibly well.  Here are some pictures.






Tomorrow Tim will get to hold Ilse.  I was sad he didn't get to hold her today, and initially the doctor said no to me holding her too, but after the nurse mentioned it he said it was ok.  I had to be very careful, though, not to pull the IV out of her tummy.... what is it called before it's a belly button?  Umbilical cord area?  At any rate, I didn't pull it out since I was careful. 

I'm still taking up milk for her.  Today I took up enough for one feeding.  Soon I'll be able to supply all she needs, hopefully. 

I've been hearing more and more about what happened when I was strung out on the magnesium sulfate.... I am so sad that the day turned out so sadly for everyone, and that the nurses up at the ex-Happy Hospital were giving so much misinformation and speculation to everyone.  That was wrong and shouldn't have happened.  For example.... there was nothing wrong with Ilse's placenta.  I have no idea what that nurse said there was.  I was told over and over during all her sonograms what a perfect placenta it was.  And apparently one nurse declared Ilse has Down Syndrome.....  she doesn't.  Scandalous, in my opinion, that they would spread so many unsubstantiated stories without really knowing what was going on.  I'm so sad for my poor family out there in the waiting room......

AND

I am so proud of my husband for assimilating all the information, keeping his sanity and cool, and making a good decision even though his Helper wasn't there to help.  

5 comments:

  1. So glad our niece is doing well! Emma--you look just radiant holding her. :) What lovely photos! Thanks for sharing them.
    Her birthday was scary for us all. I was so concerned I barely slept that night! I just prayed continually. I was so relieved to know that she was in stable condition and her problems would resolve soon. You are right--it makes me so upset when nurses give input or information--they are not qualified to do so! I had a nurse tell me the Dr would raise my heart medication, and when the dr saw me she told me that I was doing great! I was so relieved. Anyway, so glad they were misinformed, but they should not have said anything.

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  2. She is beautiful!!! Congratulations! Happy Mother's Day! We will continue to pray for you all.
    Blessings,
    Crystal & Randie

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  3. What a beautiful daugther! How are the boys doing?

    Happy Mother's Day!

    Maria (Canada)

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  4. Wow, she looks great Emily...and from the pics she does seem to be doing so well...no longer intubated, that's awesome! And also, even tho her feeds are slightly less than the doc wants she is still taking in quite a good amount! What wonderful progress she is making! I love the pics of you holding her, and I know Tim will love the first time he gets to hold his precious daughter too. So sweet. Thanks for sharing an update!

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  5. What a beautiful answer to prayer is Ilse. And, Emily, you are beautiful too....holding her with such tenderness. You will all be home soon as a family, so be patient and wait for that provision. Blessings to all of you..

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