Tuesday, August 5, 2008

August 4

Yesterday your Aunt Lori and cousins Audra, Fallon, Grace and Frank came to see you! Aunt Lori thinks you are beautiful and couldn’t wait to get her hands on you. We brought your cousins in one at a time to visit with you for a quick minute. Grace stood there and rubbed your head the whole time—you loved it! Frank had a million questions about all of your wires and monitors. And Audra and Fallon were happy just to watch you squirm. When you get bigger you are going to think all four are the absolute coolest.

We had more excitement Sunday at your noon feeding when Daddy noticed that the extension for the tube wasn’t connected, and milk was leaking everywhere. Within seconds of putting it back together it disconnected again. Our nurse experimented with it for a few minutes, and then called the charge nurse. Nothing would go in, and nothing could be pulled back. We called your surgeon Dr. Bloss to come have a look and I asked if we could go ahead and place the button. He agreed it was a good idea! So by 5:00 you had the button, a contrast study to make sure the placement was correct, and you were ready to eat through it again! The nurse cut open your tube to see what the problem was and saw the cholesterol supplements had clogged your tube over the last 3 days to the point that your milk wouldn’t go through at all. Now we know to flush the tube between each medication since it is so thick.

While Bloss was there I asked him what time frame he was thinking for your colostomy reversal. I wasn’t sure if I should be looking forward to a date, weight, age or what. He told me it would be soon, probably around the end of the year. I reminded him we were in the beginning of August and that did not sound soon to me. Then Bloss asked when I was thinking it would be removed—I told him I didn’t know but she is very stable and I would like to get rid of it as soon as possible. He considered for a minute then said they never reverse it less than 6 weeks from the initial surgery, and all her surgical teams would need to be on board with her having another major operation. When I told him the only other surgical team you have is the ophthalmology team, he said I could ask your neo what he thought. It sounded like Bloss might be considering reversing it in two weeks! So today I talked to your neo and he said we need to watch you for a couple more days to see how you tolerate feeds and then he will make a recommendation either to do the reversal or not. It would be wonderful if that could be done in a couple weeks. Originally I had been prepared for you to have it for another couple months. The only drawback to reversing in a couple weeks is that you would stay in the hospital until a few days after the surgery. There would be no sense in pulling your central line Wednesday just to come back in less than two weeks and have several more IVs placed during your next hospitalization. If they decide to wait on the reversal, I am still thinking we can go home by this weekend.

Your blood pressure is great—they started you on meds Sat and it has dramatically improved. Your OT is still working with you thinking you will start to like the passy if she doesn’t make you take the bottle. PT is coming by also to make sure your muscles don’t get tight. He is trying to train your ankles to fall in line by using tape, but you have some crazy adhesive repelling skin! Something stronger will need to be used. Your glasses were supposed to come in today, but for some reason the truck missed our stop! They have a priority drop off time tomorrow morning, but we are expecting a hurricane to hit Galveston around 7:00A. Hopefully the weather won’t be bad enough to prevent the carrier from delivering them. You are opening your eyes so much! I am so curious to see how you react to seeing for the first time!

Goodness, Daddy and I love you. My favorite part of the day is nighttime, after you get your bath and your jammies on and are all snuggled up in bed under the covers. You look so comfy and sweet—we just look at you and wish for these moments to last forever. I have spent so much time working with kids—nannying and babysitting, coaching and teaching. Before I knew I was pregnant with you, I was thinking I should take a break until we had our own kids. But I was especially tired of babies. My, how quickly that changed. You are so much fun, I would be happy if you stayed a baby forever!


Louisa Burk said...

Hello Sweet Baby Audrey, I, too, want to tell you what loving parents you must have! I know your mother as our swim team coach last year, when she joyously shared her love of children with all age swimmers of the Rolling Fork Swim Team. While our little swimmers missed 'Coach Amber' this season, we now know that her true love and heart are focused on a most precious gift of all - you! As I read your mother's blogs, it sounds as if you are as strong and faithful and beautiful as your mother! My prayers grow with you daily.

Louisa Burk

Mary said...

Hi Sweet Angel!
I have not read up on you in a couple weeks, but my prayers for you are steady. I will be thinking of you as I watch the Olympics in the next week - Lord knows the time trials that you have excelled in during your young life. Sleep well. Mary Nurre

Anonymous said...

my name is Nicole and I am also on your SLOS group, I jut want you to know that the cholesterol medicine Always clogs my daughters feeding tube as well, and I find that sometimes if you use aome form of carbonated drink (7-up or perrier) and try pushing and pulling that through, it usually works. Also I would suggest always keeping an extra Micki button at home with you so that if you have a clogged tube you can just change it at home(or take her to the ER and have them do it) as they are not usually kept in stock and changing the tube a number of time will irritate the stomach.