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Early Mother's Day: Tykei Met Gisele!

5/11/2014

7 Comments

 
She was half awake when Tykei went in, so I didn't have the heart to snap a photo of it. It was very likely she would've gotten pretty upset. I practically begged God that she wouldn't be upset because she had quite an ordeal yesterday. Every time she woke up she needed lots of consoling. God really answered my prayer. She was snuggled in her bed and sleeping so peacefully when we came in. Tykei went over to look at her for a few minutes. Her nurse, Jami, was updating me (whispering!) and I turned around to see her stirring. Tykei and Ron were just looking at her. He was bored and went to sit down. But!, after a few minutes I looked over and she was opening her eyes, so I called Tykei over. I told him to touch her palm so she'd grab his finger and she almost did but then she started falling back asleep. He was smiling. It was so sweet. I couldn't have asked for a better moment. Having Tykei meet her today was like Mother's Day for me. It was so special.

She's not on CPAP, but something called NIPPV. She got to go on this ventilator a few days ago. Still far better for her than being intubated. She's still adjusting to it, so yesterday was a pretty hard day for her. Her nurse, Lindsey, and I spent hours trying to console her so she wouldn't "fail" on this vent and have to get re-intubated. Loel was her RT. He was really helpful yesterday too. These people are such champs. I got just a glimpse of how hard their job can be. Today, the name of the game was keeping her asleep. I held her for the first time since early March. Granted, I have to hold her whole mattress because all her tubes must stay anchored to something, but she was really comfy. I really enjoyed having her so close. She had a much better day today.

So, the CT scan I mentioned on 4/30 was discussed by a group of doctors. They see what appears to be lung disease, only fixable by a drastic procedure. They plan to do it in about 10 days or so. I felt that God was leading me to bring attention to her heart, though nothing seemed wrong with it to me or anyone else. I thought I could be wrong, but why not try. I asked Dr. Ahmad for a cardiologist to check her out and he said he was already planning to have an ECG study of the heart. Only, because I was asking, he ordered it for the following day and asked this doctor to meet with me. It was done yesterday and revealed a mild abnormality, pericardial effusion (fluid around the heart). I feel the timing was imperative and not by chance. She's had ECGs before and this was not seen. It could come and go if her heart is overworked. I don't know because I'm not a cardiologist, but I'll be meeting with that doctor on Monday after he does a follow up ECG.

We're allowing our families to visit now. She's no less sick and no more strong immune-wise, but with her doctor nudging me we agreed it's time for family to visit. Very exciting.
5/12: I'm really sorry guys. I meant immediate family. She's still not in good enough shape for ALL our family to meet her.

I'll try to update Monday about my chat with the cardiologist. Prayer requests are for the doctors to find the real cause and solution. I hope it does not involve this drastic procedure they're planning to do. Please also pray for our family.
7 Comments
Louise, Tiffany's mom
5/11/2014 12:39:47 am

So exciting. What an amazing day for all of you. Happy Mother's Day for sure! :) Praying for all of you.

Reply
Linda
5/11/2014 01:08:57 am

Such great news, that sounded like a wonderful Mother's Day gift. Next time maybe we can get the photo. I hope to visit baby Gisele real soon. She must be a little bigger now, 3 months!!!

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Brenda Soules
5/11/2014 05:39:00 am

Happy Mother's Day Tiffany.
Can't wait to meet Baby Gisele.

Reply
Elaine
5/11/2014 10:21:13 am

Happy Mother's Day Tiffany.... It is great news to be able to see the baby I hope to see her next Sunday afternoon if ok!

Reply
Niki
5/11/2014 02:45:14 pm

Sign me up too!! Whenever is ok. Don't want to overwhelm her with so many Mexicans lol. I'll probably cry too much but we've been faithfully praying for her daily that I'd just like to get a glimpse.

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Niki
5/11/2014 02:47:05 pm

And maybe I can bring my camera to capture her tiny toes & cute close ups.

Reply
Odette
5/12/2014 01:20:15 am

What a wonderful Mother's Day for you!!! I am especially jazzed that Tykei was able to visit his baby sister!!
Praying fervently for NO drastic measures needed to correct the lung or heart issues. Please let our sweet Lord's healing power take care of that.
Love and prayers, always

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    Medical History:

    Born 2/7/14 eight weeks early with a large SCT tumor (Sacrococcygeal Teratoma) and lymphangiectasia causing severe chylothorax (aka pleural effusion).

    She weighed about 4 lbs plus the 2.5 lb tumor.

    Major five hour surgery to remove it on 2/13. Had to be resuscitated for about 90 mins when surgery was almost complete. It's a miracle she survived, and did not have significant brain damage. 

    The chylothorax caused a weak immune system and she passed away from a pneumonia infection on 5/21/14.

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