Wednesday, July 23, 2008

July 23

We are still in the hospital…I was hoping, once again, we would be home by now. So this time, I mean it when I say I am not guessing when we will finally bust out of here. The pod you are in is a regular revolving door—babies come and babies go so quickly. It needs to revolve in our direction.

Your feeds are up to 36 CCs over an hour every three. Halfway there. It took 10 days to get to this point—at Women’s it took 4 days to go from 0-65 CCs. Your reflux has been really good up until yesterday. You spit up really big a couple times in the night—I am hoping it was just a fluke and you are feeling better today. The renal doc came to look at your kidneys yesterday to see if she can find the cause of your high BP. She didn’t seem concerned, telling me that your BP isn’t high enough or consistent enough to warrant any meds and that she didn’t know if the high BPs were while you were upset. I told her your BP is usually only taken once, maybe twice, a day and always when you are asleep. Then they will take it several times in a row until they get the lowest number possible, and that is the one they write down. They will take it more often when I ask, but I don’t know if they write it down or not. But all the numbers I have seen are well above the normal range for infants. So now the nurses are supposed to take BP every 8 hours and document other outside factors also, such as whether or not you are fussy and if the cuff was on the arm or the leg.

Your ophthalmologist should come today to do a refraction test! You have peeked your eyes at me a few times in the past two days. I keep telling you not yet, just a little longer! I am anxious for you to see, hoping the visual stimulus helps you to perk up a little. A developmental doc will check you out today also to let us know if you are behind—there is a little concern over your weak muscle tone. Still slowly working with OT. There is some progress, you are much more tolerant of the bottle in your mouth.

Daddy has been missing you lately. This week is a busy one for us and he doesn’t get to spend as much time with you as he wants. But when you are together, you two are pretty cute!


mary said...

Amber and Daddy ~ I am a friend of Trish Shapiro's who has just sent me your touching daily blog. I have met your mother once, as I also have done dog duty. Your love for your daughter is so deep, your caring for each other is so genuine, your new knowledge of medical terms is a gift. Your trust is Christ and the spirit of God will see you through in these first months, and the answers will be clear. I will pray daily for Audrey, more than I do for my 25 nieces and nephews. God had big plans for your little girl.

jENI said...

hi y'all...been thinking about you...xoxo-jENI and Kindel

bellabeeandanthony said...

Dear Amber and Brad, We are still praying every day for your family. Hang in there. You are such a fabulous mommy and daddy. Audrey is beautiful and sweet and Mary's right, God has important plans for her. Big hugs and kisses to Audrey. Love, the Nanninis in DC

Anonymous said...

I have been keeping up with you and Audrey through Sandy Weber. She finally sent me your blog. What an awesome mother you are. We too have dealt with a genetic syndrome with our youngest who is now 18. My advice to you is to keep your wonderful attitude and keep praying. A mother's love is a powerful thing that will take you and Audrey beyond an limitations that might lay ahead.

Dianne Paris - Jenn's mom

Great Aunt Brenda said...

Dearest Amber and Brad, this is Your Aunt Brenda and Beautiful Great Aunt to Audrey. The PRAYERS ARE ALL OVER THE COUNTRY FOR YOUR BEAUTIFUL FAMILY. Remember God Understands what we don't and Mother always said look at embroidery, turn it over and all the threads are tangled and a mess, this is life, turn it back over and it's beautiful, that's God'Promise. I Thank God for Your Family being so Faithful. Also know the Catholic Church will donate free health care and equipment. and you don't have to be Catholic. I love you all and will see about the church helping. God Bless. Kiss my Rebecca for me and Mama Stephens. Can't wait to see you all together. Brenda J. Somerville,