Lyla's Gastroschisis Journey

the NICU days

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10 months old today and praying for negative blood cultures

Yesterday was a very eventful day! I woke up thinking it would be a normal Monday morning, the nurse comes, draws her labs, weighs her and leaves. but NO... She couldn't get any blood back from her central line, and that worried me. Its never happened before. ALSO she has been running low grade fever on and off since last Thursday, I just figured it was from teething. The nurse left and called GI. a few hour later the GI nurse called me concerned about her fever and said she was going to talk to the doctor about taking her to ER. instead of ER they had another nurse come out and flush her line with TPA(Tissue plasminogen activator) to breakdown any blood clots. we waited 30 minutes and tried to draw back blood, and still nothing, but fever. Did a second dose, waited another 30 minutes, and wah lah It worked. The nurse was able to draw labs. I asked her about the fever and she wasn't worried, said its probably because of her teething. I thought we were done with nursing visits for the day. But I was wrong. I got a call from the pharmacy asking how she was doing because some of her electrolytes are high. Then a call at 830pm from a different nurse saying she needed to come out to draw more labs and blood cultures to check for infection. It was a long day, but I still manged to do laundry, frame my certificate from the milk bank, and set up Lyla's crib.

so proud of my certificate for donating 970 ounces of breast milk.

This is what her hair looks like in the morning.

And this is what it looks like after her bath.

We went to the park the other day when it was like 80 degrees, and I took her pictures, here are some.

We are still waiting on the blood culture results.

& Lyla is still running a low fever on and off.

Please pray for negative cultures

LOOK AT ME NOW!!!

On New Years Lyla rolled over for her tummy to back and hasn't stopped doing new things since. 

about a week ago, I sat Lyla up to brush her hair, and she sat there all by herself for about a minute. and now she sits up all day, playing with her toys.

Hers a big girl now!

The physical therapist comes out 3 days a month, and the speech therapist comes out once a week now. She is still watching her Your Baby Can Read DVDs and is starting to recognize words. She tries so hard to clap. AND her bottom left tooth broke through yesterday : ) 

Her hair is getting so long, this is what it looks like when she wakes up.

We went to Cooks to visit our friend Thomas after his surgery to reverse his ileostomy.

Lyla and Thomas are old friends, they were NICU neighbors.

Lyla loves riding forward in her big girl stroller.

 She is up to 20ml/hr tube feeds. She would be farther, but there have been a few days thats she doesn't want to eat her bottles, so I'm not increasing as fast.  The first day that she didn't want her bottles really worried me, because she was also really pale. Her anemia had me worried so I called the on call GI and they had me take her to ER because it was the weekend. They did labs and they were actually better then the labs before. we were sent home and the next day she ate her bottles fine. She went to Dr. Yee Jan 10th for shots. Her upcoming appointments are hematology on Jan 27th & GI on Feb 6th.  

Its crazy how fast Lyla's first year has gone. I want to do her birthday party on Sunday, March 25th. I don't know where or what time, but I do know its going to be Minnie Mouse theme, and Icing Smiles is giving her a cake : )