Charlotte simulator FAIL. No screaming and tears.
T-minus 3 days
Starting the day off on a good note!
The look of a baby girl plotting her next attempt at feeding tube freedom
Not every baby gets to have a nurse who is family (my cousin Kate)
September 20, 2009
November 8, 2009Over the last week we've been in discussions with Dr. Wu on Charlotte's next move. Her eating has improved the last 48 hours, but she is at most taking 30% of her feeds PO (by mouth). So she still needs some sort of feeding tube, either nasogastric (above) or gastrostomy (stomach = surgery) for the foreseeable future.
But, since her feeding is really the only condition being treated at the moment, Dr. Wu felt it was possible for us to taking her home. The only catch is that we will have to be ones responsible for replacing the feeding tube should Charlotte pull it out. More on that later.
Since her last follow-up eye exam is this Wednesday we decided to stick around here until then. Come Wednesday (possibly Thursday) we'll be on the road back to Houghton.
We were conflicted about whether or not to go home with the NG tube or have the gastrostomy tube put in now. The NG tube doesn't require surgery, but being on it long-term (months) isn't good either (skin breakdown from the taping, throat irritation).
In the end we thought the gastrostomy tube represented "giving-up" to some extent and we're hoping that Charlotte quickly progresses to full feeds once we're home. So the decision was made to give her one month with the NG tube at home and after that we'll have to reevaluate and probably have the gastrostomy tube put in.
So we get to go home - good. But about that NG tube and putting it in... We got Polly up there to practice inserting and taping the tube. So easy on a doll. So not even close to simulating the sheer panic of inserting it in a writhing baby screaming bloody murder as Katie found out this afternoon.
Charlotte obliged us with live experience this afternoon when she pulled out her tube just before her 3:00 feeding. The hard/frightening part of inserting the tube is that you have to make sure it goes in her esophagus (stomach) not her trachea (lungs). Pouring milk down a tube that empties into her lungs would be very, very bad. So no pressure on Katie when she took up the tube this afternoon.
I steadied (restrained really) Charlotte's head and arms while Katie started to feed it in. Immediate screams of course. Katie had some difficulty getting it to go down because Charlotte's nose is a bit inflamed. Once she got it to the correct depth it was time to check that it was in correctly. The nurse hooked up the syringe and pulled back - nothing. She should have gotten some milk if it was in the stomach, but all that came back was air.
Charlotte had puked up her milk/vitamin earlier so it was entirely possible that Katie had inserted the tube in the stomach, but it was empty. But the nurse had Katie pull the tube back out and start over and that just about killed us. It was bad enough doing it once, but to have to do it again seemed just cruel.
After going through the ordeal all over again and still getting nothing back, we tried feeding Charlotte a little milk through the bottle and when the nurse pulled back again and tested the pH all was good. Pray to god she does not pull out that tube at home, because the both of us walked away from that experience shell shocked.
By some miracle, Charlotte managed to eat 20ml after that. Then she took 14ml at 6:00 and 15ml at 9:00.
On a lighter/positive note, Katie realized at 9:00 that we had been been using the wrong bottle nipple, probably since the hubbub at 3:00. We usually use a regular flow nipple to mix the big bottle of milk+formula and then distribute it to smaller bottles for each feed where we use the slow flow nipple. They got mixed up and we had been using the regular flow, which comes out much faster and has overwhelmed Charlie in the past. But she took it just fine and it's probably the reason she took so much at all her subsequent feeds. Lets hope she keeps it up!
But, since her feeding is really the only condition being treated at the moment, Dr. Wu felt it was possible for us to taking her home. The only catch is that we will have to be ones responsible for replacing the feeding tube should Charlotte pull it out. More on that later.
Since her last follow-up eye exam is this Wednesday we decided to stick around here until then. Come Wednesday (possibly Thursday) we'll be on the road back to Houghton.
We were conflicted about whether or not to go home with the NG tube or have the gastrostomy tube put in now. The NG tube doesn't require surgery, but being on it long-term (months) isn't good either (skin breakdown from the taping, throat irritation).
In the end we thought the gastrostomy tube represented "giving-up" to some extent and we're hoping that Charlotte quickly progresses to full feeds once we're home. So the decision was made to give her one month with the NG tube at home and after that we'll have to reevaluate and probably have the gastrostomy tube put in.
So we get to go home - good. But about that NG tube and putting it in... We got Polly up there to practice inserting and taping the tube. So easy on a doll. So not even close to simulating the sheer panic of inserting it in a writhing baby screaming bloody murder as Katie found out this afternoon.
Charlotte obliged us with live experience this afternoon when she pulled out her tube just before her 3:00 feeding. The hard/frightening part of inserting the tube is that you have to make sure it goes in her esophagus (stomach) not her trachea (lungs). Pouring milk down a tube that empties into her lungs would be very, very bad. So no pressure on Katie when she took up the tube this afternoon.
I steadied (restrained really) Charlotte's head and arms while Katie started to feed it in. Immediate screams of course. Katie had some difficulty getting it to go down because Charlotte's nose is a bit inflamed. Once she got it to the correct depth it was time to check that it was in correctly. The nurse hooked up the syringe and pulled back - nothing. She should have gotten some milk if it was in the stomach, but all that came back was air.
Charlotte had puked up her milk/vitamin earlier so it was entirely possible that Katie had inserted the tube in the stomach, but it was empty. But the nurse had Katie pull the tube back out and start over and that just about killed us. It was bad enough doing it once, but to have to do it again seemed just cruel.
After going through the ordeal all over again and still getting nothing back, we tried feeding Charlotte a little milk through the bottle and when the nurse pulled back again and tested the pH all was good. Pray to god she does not pull out that tube at home, because the both of us walked away from that experience shell shocked.
By some miracle, Charlotte managed to eat 20ml after that. Then she took 14ml at 6:00 and 15ml at 9:00.
On a lighter/positive note, Katie realized at 9:00 that we had been been using the wrong bottle nipple, probably since the hubbub at 3:00. We usually use a regular flow nipple to mix the big bottle of milk+formula and then distribute it to smaller bottles for each feed where we use the slow flow nipple. They got mixed up and we had been using the regular flow, which comes out much faster and has overwhelmed Charlie in the past. But she took it just fine and it's probably the reason she took so much at all her subsequent feeds. Lets hope she keeps it up!
7 comments on "November 8, 2009"
This is the most exciting post yet! I am so happy that she gets to go home.
That being said, the doll really creeps me out.
So excited for you guys.
Also, Happy Due Date!!
:)
Exciting news!!! So happy for you three.
-Katie Wrich
You two should be proud of yourselves for having the strength day in and day out to do all of these things like the feeding tube.
You're in our thoughts and prayers. I hope you get to take her home soon.
~Kelly and Paul Simon
Wow - I give you both props in being willing/able to insert the feeding tube. I don't know if I would be able to do it - Pretty sure my nervous and anxiety would take over. So good job to both of you. I'm hoping she doesn't pull it out once you get home! And congrats on getting the green light to go home! How exciting! Today looks like it's going to be a good week :)
Love Marissa
p.s. Is Charolette's nickname Charlie or is that just a typo at the end of the posting?
You are certainly racking up more of those "parental stress points" again. I know its difficult, but you *can* do it.
I admire your courage and endurance. You are special people.
Keep up the good work.
Jim Curtis
P.S.
Just think how easy her first date, driving, etc. will be after all of this! ;-)
Katie, Pat and Charlotte,
What great news! We can't wait until you're back in Houghton getting settled at home. So glad her time has come to go home. See you soon!
Michelle
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