Wednesday, November 13, 2013

Thankful for Our Trial

This morning I woke up ever so thankful with a song in my heart from Psalm 121

I lift up my eyes to the mountains—where does my help come from?
 My help comes from the Lord, the Maker of heaven and earth.

 He will not let your foot slip—he who watches over you will not slumber;
 indeed, he who watches over Israel will neither slumber nor sleep.

The Lord watches over you—the Lord is your shade at your right hand;
 the sun will not harm you by day, nor the moon by night.

The Lord will keep you from all harm—he will watch over your life;
 the Lord will watch over your coming and going both now and forevermore.

Maker of heaven and earth! That is who is in control and is taking care of our sweet Grace. How awesome is that? I am filled with praise and gratitude for the ways I see God working. Not only in healing Grace but in how He is at work in my own heart.

John went to work the past few days but this afternoon he was happy to see Grace again and more alert than ever. He jumped right in with changing her diaper, swaddling her, talking to her, and cuddling with her. I love that man! 

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Our favorite nurse, Tia, was on duty which made it all the better. Tia was there when Grace was admitted to Children's and saw how bad she was and how far she has come. We also got to see Dr. Scott who was the doctor who worked on Grace when she arrived. He has been in the progressive care NICU and said she'd be the perfect candidate to move to that area since she is off oxygen and NO MORE PICC LINE! It is a step down unit and much more family friendly. If he can "pull some strings" he will try to get her moved later tomorrow. That way we could bring all of our kids and hang out in her own room.

One of the harder things about all of this is the shuffling around of our children. We have been blessed with a wonderful family and many friends who have jumped in to help in any way they can. This morning when I was home with the kids Simon had a melt down. This has been the hardest on him as up until almost two weeks ago I was always there for him. This morning was a screamy kind of day and he needed a lot of holding. I think he is ready to go back to a routine and so am I. Katie on the other hand thinks going to different houses and people coming over is so much fun and doesn't want it to end.

Grace now only has an NG tube which they put in last night and that allows her to suck better but still get the gavage (tube) feeding if needed. And of course the sensors that monitor her heart rate and pulse.

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We asked about the goal for feedings. Based upon her weight which today was 7# 3 oz. in order to go home she would need to take in 2 oz a feeding with 8 feedings in a day. At this point it is based on her hunger cues to an extent. The nurses document every little detail with each feeding from her muscle tone to if she took in a lot of air or fell asleep. Once she starts getting the hang of this it won't be as scheduled. But Tia gave me much more time to try feeding Gracie today. They weighed her before and after and she drank 24 cc which which is a little under one ounce but was good as she is figuring it out. John gavage fed her 34 cc more. She was hungry again before we left and I attempted to feed her but she ended up just cuddling up to sleep instead.

We have found Children's hospital to be such a wonderful hospital. Tonight they served a free dinner to families of patients. In the lobby they had tables set up with tablecloths and table settings. We were served a turkey dinner with all the fixings and had live dinner music. Quite nice and saved a bit of money too. We sat and talked with a lady who is staying with her severely autistic son who just had surgery. She said he hasn't talked since he was 3 years old. And it made us again thankful for the trial we have been given.

Then while we were cuddling with Grace we heard an alarm that we hadn't heard before. Tia told us we never want to hear that one. When we left, the doors to the pod across from ours were closed and I saw through the window a doctor in scrubs and masked working on a baby who came in yesterday. The parents and family were out in the waiting room. I had seen the mother Monday as she had just given birth and came to see her baby. And yet again so thankful for our trial.

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We are beginning to see the light at the end of this tunnel.


Heather said...

Thankful and praising Him along side you. And, welling up over that beautiful little girl of yours - she is gorgeous!

Anonymous said...

Wonderful photos, Amy!

This will be an extra special Thanksgiving for your family. So many little things to be thankful for even though it is still a rough patch for the time being.

We continue to pray for you all.


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