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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Saturday, September 25, 2010

Lillian Eva and the Terrible Horrible No Good Very Bad Day

Weight check = 5.4 lbs. Lilly is now FINALLY over birthweight!! Thank you God!

My weary husband told me that Lilly had a very bad night last night. (Which of course meant he had a rough night.) Lilly didn't sleep well at all. She couldn't get comfortable for long and was fussy. She kept setting off her breathing alarm.

This morning she had another chest x-ray and it showed she had A LOT of fluid around her lungs. So that was what was wrong last night - she was really struggling to breathe. By the time I got to the hospital today she had a breathing tube in her nose. They were just giving her a tiny bit but it seemed to be helping some. She had so much fluid because they had stopped the Lasix yesterday in an effort to get her sodium levels back up. Obviously that turned out to be a mistake. So they restarted the Lasix today and gave it to her by I.V.

This afternoon she developed a fever. It was just under 101 degrees. It dropped slightly after more medication. (Ugh - my husband and I are having a hard time with all the medication being pumped into Lilly. It seems everything has a side effect.)

As the day progressed, Lilly's breathing got worse. It was horrible watching how hard she was struggling. (Made the worse that the white t-shirt she was wearing was so wide on her that it was hanging off her shoulders. Lilly's a normal length, but I need to learn to make her some extra extra extra slim sized clothing.)

There was enough concern that a doctor from the pediatric intensive care unit (PICU) was summoned. He studied Lilly for a few moments and then held her and commanded that her oxygen be turned up. Immediately following that Lilly completely relaxed and stopped fussing. After further observation, the dr. said that he would be able to better treat Lilly in the PICU because they had some resources that the floor she was on did not.

So we hurriedly packed up our things in Lilly's room and the nurse led us to Lilly's new room in the PICU. There was a flurry of activity at first and Lilly was quite agitated. Nurses kept trying to get her to take a pacifier to calm down and I kept telling them that she had no interest in one. Finally they finished on Lilly for awhile and asked me to try to calm her. I couldn't get her out of her bed because of all the stuff she was hooked up to so I cradled her head with one hand and with my other held her little hand. I started speaking quietly to her and she stopped crying quickly and calmed down to normal. She was so alert and her eyes so big as she watched me. We ended up having a nice little conversation for quite a while. She was making a new type of cooing noise and it was so wonderful to have her relaxed and at peace after such a stressful day. (I think she did it to reassure me because I kept wanting to burst into tears part of the afternoon as I watched her struggling to breathe. After our "conversation" and seeing the extra care she was getting I felt so much better as I left the hospital tonight.)

Thankfully the PICU allows one parent to spend the night so my husband is able to continue to stay with her. Lord willing they'll both get some decent sleep tonight! (It's amazing how something as simple as sleep makes such a huge impact on one's day.)

Today's scripture that encouraged me: "Now faith is the assurance of things hoped for, the evidence of things not seen." Hebrews 11:1

Now on a completely different note - for those of you that know my youngest brother P. - his wife K. gave birth to their 3rd child today. The biggest surprise was that it was a girl! (They had thought it was going to be a boy.) So Lilly has a new girl cousin. That sweet new baby may be bigger than Lilly, but Lilly can claim "older" status. :)

6 comments:

  1. Poor Lilly...we love you baby. I'm so happy for you that they let a parent spend the night in PICU. They have so many more resources there and many of the PICU nurses have xtra certifications and specialities. The nurse to patient ratio is also very different and more favorable to the patient:) Praying for a calm day today!!!!

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  2. It is obvious that Lillian Eva knows her mama and daddy. smart girl! so our prayers increase, for her and her m and d. God be with you all today. love you forever
    mj

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  3. It is very hard to READ about her bad day/night... so I can only imagine what it was like to live it.
    Certainly praying for a better day today!!
    hugs.

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  4. dear little granddaughter,
    how blessed you are to not only have a Heavenly Father who continually watches over you, but an earthly father who has not left your side since you were admitted to the hospital. looking forward to your healing and our return to fuquay. big brother and big sister miss you.
    love,
    mah mah

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  5. Praying for little Lilly and your family.

    Susan Baker, Kathryn, and Alan

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  6. How Beautiful she looks in these full bodied pictures with her eyes wide open and the peaceful look on her face. She looks like a little china doll!

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