Friday, July 30, 2010

July 30, 2010



And the Grastrojejunal Tube is in place! It has been a pretty stressful 24 hours, so to start the blog I'm posting a fun bath photo from earlier this week. Look how much hair she's getting!

Yesterday we departed Houghton at 7 a.m. EDT and ended Charlotte's feeds at 9 a.m. CST in preparation for her 3 p.m. procedure at Children's Hospital of Wisconsin. At around 11 a.m. she woke up from her car nap and was the happiest, most content baby we have ever, ever seen. It was absolutely delightful. She stayed awake for the rest of the day (a first!) and played happily in the car and then in the hotel room when we arrived around 2 p.m.

Then we, being the cruel parents she has every reason to believe we are, took her to the Radiology center at CHW for her GJ Tube. This was supposed to be painless, but then we've heard that before.

Only one of us could be in the room with her during the procedure so I stayed while Patrick went to the waiting room. The Physician's Assistant performing the procedure had never seen an AMT button before and struggled to remove it. Another doctor made an attempt and just as their frustration was becoming clear and they were leaning toward calling GI to come remove it, it came out with one hard tug. By this time Charlotte is screaming with tears rolling down her face and I'm trying so hard not to cry (the PA said if we couldn't handle it we should both be in the waiting room so I had to look tough).

Of course placing the GJ Tube didn't go smoothly either. For some reason they had difficulty pushing it in but eventually everything was in place. In all, the procedure probably took no more than 15 minutes. When Patrick came back to the procedure room he surprised Charlotte with a balloon! She loves these balloons - so fun to play with. Here they are with the balloon back at the hotel:

We thought the GJ Tube would externally look just like the G Tube, with a low profile button. When we arrived the PA told us she had to be 20 lbs to receive the low profile version and since she's only 15 lbs 15 oz (almost 16 lbs!!!!) she got a bulky piece of hardware.

The picture above shows the material they gave us to wrap around her belly and keep the external portion of the GJ covered, away from prying, pulling hands.

And here is what we see of her GJ Tube. The round disk should be kept flush with her skin and just above it is a black mark so we can monitor if the tube is being pulled out of place. As you can see, there are three ports.

BAL. is the port used to inflate the balloon which holds the GJ in place. We are never to touch it because we would have no way of knowing if the placement is correct. Only Radiology can do this.

Gastric empties directly into her stomach. We won't use this port unless we are told to vent her G-tube and let the gastric juices out.

Jejunal empties directly into her intestines and this is where we hook in her pump to administer her feeds.

An up close view of the entry point which is often compared to the holes many people have in their ears for earrings.

Here she is all hooked up! The pump is now running at a rate of 45 mls/hr. She's yawning (not crying) in this picture.

I spoke with the Dietician at the GI Clinic this morning and she is decreasing the volume of Charlotte's feeds from 1050 mls/day to 805 mls per day. So, we'll be feeding her at a rate of 35 mls/hr 23 hrs/day. We need to flush the tube with 10 ccs of water every 4 hours to prevent it from getting plugged. If it does get plugged, get this - we can try to clear it with coke! If that doesn't work we'd need to bring her back to CHW for a fresh tube - not an easy thing for us to do in Houghton, but it'll happen if it needs to.

Last night was a rough night. Charlotte probably slept a total of 4 restless hours. I'm currently waiting on a return call from the GI Nurse to find out if we can do something to make her more comfortable.

On a side note, I've been told more than once since having Charlotte how lucky I am that she was premature and I didn't have to get so big and uncomfortable with my pregnancy. I want to let everyone know that having a premature baby is in no way a good thing. Having a premature baby that we got to take home is very much a blessing but I would trade any amount of pregnancy weight for a full-term, healthy baby. Even now it's heartbreaking to hold her hand and hold her down while she screams during procedures and last night to hold her for hours while she cried out of discomfort and threw up stomach juices. But again, the blessing is that we get to hold her and love her and know that things are going to get better, 20 years from now these will all be distant memories.

3 comments on "July 30, 2010"

Andi on July 30, 2010 at 12:47 PM said...

How come nothing ever goes like it's supposed to!?!

Glad she's got the new tube. Hope it brings easier days (and nights). Hang in there, guys. "They" say it really does get better ;)

Anonymous said...

Your last paragraph brought tears to my eyes... I'm currently wrapping her bday present and just got done writing in her card... The whole time I kept thinking what a little miracle she is and how lucky we all are to have her and you here with us today...

I can't believe it's almost been a year since I got the phone call from Pat with the news, on your Wedding Anniversary none the less - I can still hear the fear in his voice as he was telling me what took place and how he almost lost both of you...

I know this has been a trying year for all three of you and hopefully within the years to come it will get easier. And like you said, in 20 years this will all be a distant memory...

Every time I read your posts, you amaze me with your strength and courage. I truly believe everything in life happens for a reason - Though we may not always know why or understand the reasoning behind why we are given the challenges and obstacles we are in life. But I also believe that we are not given anything that we can not handle... Your love, faith, family and friends will help you get through the years to come. Sending you a BIG HUG and LOTS of LOVE!

Love always, Marissa

Anonymous said...

Katie~

You are absolutely correct that gaining weight during a pregnancy is SUPPOSE to happen. I have said many times in the last five years that if a prenant woman gaining weight is their biggest complaint, they should consider themselves blessed. Pregnany is a beautiful, but very dangerous experience. Weight gain is one step closer to a happy, healthy baby. Those women should consider themselves lucky and be quiet!

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