Sunday, April 28, 2013

Roller Coaster, Grrr.

Tatum Update:  After having such a great day yesterday, I knew it was going to be hard to match for today.  Well I was right.  Tatum had a pretty good night and a pretty good morning, but the minute we got her going for the day, the gurgle machine started.  She did alright at the beginning of church, but it was downhill from there.  She started getting pretty gurgly during the first hour.  I had only brought my little portable suctioner, not the machine from home and I did not bring the sat monitor, so I had no way of checking her Oxygen level.  So I did suction her a little with the little suction device that I had, but I just was not feeling like it was doing a very good job.  By the end of church I just wanted to get her home and hook her up to the monitor to check her.  So that is what I did.  Well, the little stinker was at a 96!  She sounded pretty horrible, so i suctioned her a little bit and then she settled down and did much better since we have been home.  She is still a little gurgly, but I just understand that she has good days and bad days.  The bad days make me really appreciate the good days.
Tonight I went to the hospital to do a hand mold for a daughter.  Her mother is getting close to the end of her life (she is 91!), and she wanted a mold of her holding her mothers hand.  After I went and did the mold I went to the NICU to pick up some supplies.  One of the ladies that was working I have known forever and she has two kids with Cerebal Pulsie.  She asked if we were going to have a consult up at Primary childrens about Tatum's secretions and I told her we were on Friday.  She asked which doctor we were going to see. I told her and she said, "Oh you will love her, she has done all of my sons injections".  It was comforting to talk to her.  I have been a little nervous ever since I made the appointment.  Especially when Tatum has a good day like yesterday, i start to second guess myself and our decisions.  I think, oh her secretions are fine, it's getting better, we don't need to see a doctor.  Then she has a day like today and I think, we really need to do something for her!  Roller coaster.  The Lord works in mysterious ways to give me comfort and hold my hand:)
These pictures were from yesterday.  Hilary kept insisting that Tatum was cold (in reality it was about 80 degrees in our house!)  She just wants to help her little sister as much as she can.  Adorable.
Hilary is coming from the back this time, putting the blanket right over Tater bug's head.  Notice that the yo gabba gabba guy keeps appearing right next to her:)  I adore sister love.

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