Transport team here now. They are packaging her now for movement.
She had a good night.
Adam
0900 hours.
We are at mcg. I know I know, it's not mcg but its written all over the place.
It was hard hugging everyone and saying goodbye but we did and we are here now.
Adam
1130 hours.
My allergies are playing havoc on my sinuses. Argh to them so I can't be in with her right now. They let us come back there and it is quite different than university. She is in a room by herself but it has a window. She is in that room for testing for infections and all. To enter that room we have to have gowns on and gloves. But so do the nurses. They are serious about germs. She is hooked up to nearly the same equipment as at university and stats are the same. The feeding tube is different so they had to pull it out and they will out their own in that is compatible to their equipment.
She is supposed to be enroute to the radiology unit which is on the 2nd floor. More of that later when I get more details.
I ran into another mother that had been at university when we were there that had a baby when we did. It was good to talk to her. I am sure we will see others here we will recognize.
Adam
1500 hours.
We have talked to some people regarding the surgery and are finally getting some answers. We are now in the radiology department in the hallway waiting for the next procedure. I forgot the name but its where they pour some contrast liquid into her and watch her through the X-ray machine and see how far she reflexes and if it really is reflux and all that. What this does is provide concrete evidence that the surgery is what will fix the problem.
Adam
1544 hours.
We saw the reflux. It wasn't just a little bit, it was a giant blob. Stomach is normal sized and intestines work. You could see the contrast liquid go down and straight into the intestines. Then it filled the stomach and shot up her esophagus. Now to talk to the surgeon about it.
Adam
1638 hours.
Quick meeting with dr. Surgery will be delayed for further testing.
More to follow after we talk to Aubrey.
Adam
1900 hours (7pm)
Two emotionally exhausted parents are back home.
What a day. First let me back up and say that the first initial skin test for infections and MSRA came back clean. No more gloves in her room. We still have to gown up, but now we can touch her.
We had a long talk with the surgeon, Dr Pipkin. He explained the surgery in-depth to us and stated that he had the slot open for the surgery tomorrow, but that he wasn't totally convinced that what he was doing was 100% the answer to the problem. His opinion was to do some more testing to confirm that this procedure was going to fix the problem. He asked us what we wanted, we said we agree, wait and do more testing.
Here's the thing. All babies reflux. And we even saw the big blob heading up her esophagus. We can prove reflux. But is the reflux causing the episodes is the question. There could be other reasons, so let's take them out of the equation first. And meanwhile let the stomach grow a little more so that if we do find out that this surgery will fix the problem, the stomach will be big enough to do the wrapping.
(The surgery we are talking about is the tightening of the esophagus using a wrap of the stomach closing off the esophagus. Then insert a burp tube that will allow us to feed her and burp her. There are technical terms for all that but you get the point.)
Dr Pipkin has no evidence that she is gagging on lower GI stuff rather than upper GI stuff. She could be having problems swallowing her own saliva causing a gag and chicken neck reflex. That would cause an episode. And the episodes are so random that that causes a red flag too. The feeding now is continuous and there is nothing that changes, and she refluxes and overcomes it all the time, so why sometimes does she run out of oxygen and turn blue.
So they are going to do a swallow test. They are going to feed her breast milk in her belly. They are going to monitor what color the spit up is - clear, indicating saliva, or milky indicating milk. They are going to monitor her when she goes into an episode what caused it and what happens during it, and what brings her out of it. And some others but I can't remember.
The swallow test they usually do after she is full term. No word on when that test will be. But they have a specialist watch how she swallows and does analysis on that.
The milk in the belly is something else they are going to monitor more closely. Tonight they gave her a little less milk than she has been getting but all in her tummy. This should help stretch it out. It will be given to her over an hour and a half time span. Next, if she spits it up, they will give her a thickened formula (breast milk can't be thickened due to its makeup) over 2 hours.
All these different things are going to be tried and more information gleaned and a better assessment made. Dr Pipkin would feel better regarding the surgery when he has more information. We could still determine that surgery is the best answer and we will have lost no ground. If we don't have to cut on her, then lets not do it.
Me personally, I am greatly relieved. I just felt in my heart that this surgery was wrong for her. But I might be wrong.
Keli on the other hand, had her hopes up that this would fix all the problems. And now that there won't be a surgery, those hopes have been dashed, and she is very upset emotionally. I feel so bad for her.
I am so grateful for the Drs and staff at University Hospital. They have been calling MCG (or whatever that place is) and getting people to get information together and even schedule the surgery so quickly. The MCG Drs and nurses are always saying they heard from some one at University this or that. Even Dr Bartley, the Dr assigned to us at University, called Keli making sure that everything was ok this morning, and that he knew people at MCG that would make it ok if it wasn't.
So we wait.
Argh.
Adam
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| The bed used to transport Aubrey to MCG. It even has a seatbelt. |
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| Still in the Giraffe bed, but that is only for ease of moving her around. They keep the heat on in case she gets a chill, but holding her is certainly allowed. Keli looks sexy in the gown. |
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| So brave in such a big scary machine. |
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| Children's Hospital of Georgia (of Augusta) which is part of Georgia Regents Health System (of Augusta), a Division of Georgia Regents University (of Augusta). Looks like MCG to me. |
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| Sound asleep. |
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