Tuesday, December 22, 2009

Ain't nothing but a G tube baby!

Yes, you read that title right. Sorry, but I have to bring some kind of humor to it. 

We have come to a decision that we are most likely, definitely probably, going to have a G tube placed in Leah sometime in January.  I think we've been walking a path towards a G tube for some time now.  I haven't written about it until now, but Jeff and I have been discussing it for awhile - trying to figure out what is best.  As of a few weeks ago I had come to have some peace about the idea and had decided to move forward with it and was hoping to hold off on it until after Leah's 1st birthday.  However, as we've been weighing her these past few weeks - the numbers are not good.  Her eating hasn't really changed - but she is getting taller and is not taking in the calories she needs to facilitate that growth.  If this growth with no weight gain continues -- we'll be in big trouble. 

So, I went onto Children's National Medical Centers site last night and requested an appointment with a GI doc.  Once I know the day of our appointment I will contact everyone at Children's (Leahs dermatologist, the Wound Care specialist who is very familiar with EB, etc.) to get coordinated and share all the info we'd need to get it done.

It's a big decision ..... and it sucks.  I hate that I have to debate in my mind whether or not to voluntarily put my daughter into the hospital to have a tube inserted into her stomach just to successfully feed her the nutrition she needs

For those who don't know - placement of a G tube is quite common in EB'ers.  Leah will not be the first EB baby with a trach and/or a G tube ... and unfortunately, she won't be the last either.  Damnit I HATE this disease with every fiber of my being. 

On the bright side, Leah's trach actually makes the decision easier.  While intubation is a big concern with most EB kids .... Leah won't need it; she's already got a tube in her throat. 

I think that if we continue as we are now, without a G tube, Leah would die ........ then again she could die with it ........ or, (a real slap in the face), because of it - should the site get infected and should that infection spread.  However, at the end of the day, I can't hold off on this just because I don't want her in the hospital or I'm worried about what might happen if it gets infected.  I know what will happen if we flat-out don't do it (but I already wrote it once just a few lines up and I don't like talking about that) .......... and I'm not about to let that happen.

So I feel like I've done my part ....... thinking about it, praying about it, discussing it with Jeff and coming to our decision.  Now it's up to the doctors, and ultimately: God, to see that everything with it goes well and Leah comes home ready to put some weight on. 

A G tube would take a lot of the pressure off.  So much of my day is spent trying to get Leah to eat, counting her intake of ounces so far for that day, comparing this day to yesterday, counting the hours between the last bottle and the next one. 

Leah only really eats well for me, and Ann at night ....... so during the day when Jeff is home, I can't stay out of the house for long periods of time.  I'm constantly looking at the time to figure out when I have to finish up whatever I'm doing to get home to feed Leah. 
With a G tube I wouldn't have that worry.  We could have cuddle time or play time as long as we wanted - without me having to piss Leah off by trying to feed her.  I could drive her up to Philly to visit my family ....... or in the spring and summer I could take her to my families shore house in New Jersey without worrying about where, when and how to feed her.  (I can't wait to show Leah the ocean - and eventually teach her to play Skee Ball).

Sorry to have to write kind of a bummer post so close to the holidays but I just wanted to get the word out - so thanks for reading and please continue to pray for my little sugar dumpling.


Janel Waters said...

That kind of decision sucks on so many levels! Even though I have EB, making decisions for yourself is so different from making decisions for your child.

I pray that you won't have to do the G-tube - That Leah will decide its time to eat and put on some weight all by herself (and God!).

I can't image how difficult this decision must be for you guys.

I am just so sorry!

Janel :(

Anonymous said...

We continue to keep you all in our prayers for strength to endure all that you are going through, wisdom for you and the doctors, peace and comfort for Leah. We love you all, Aunt Penny

Patrice said...

Praying. Praying. You know that I know how you feel, and I totally understand your decision. I am SO glad you won't have to worry about intubation, even though the reason you don't have to worry about it sucks within itself. I'm glad you have peace about the decision and will pray for a legion of angels to take guard over her.

Love you guys.

Linda said...

Hi Love:
I know it was a very difficult decision, but I really think it is for the best.
God has been looking over this little girl since day 1 and he will continue to bless her. No worries!!! God Is Good!
Love you guys. See you soon. Give Leah a big kiss for me. Love Mom XOXOXOXOXO

Nicole said...

I dont think its a bummer of a post. it sounds like its the best thing to do in a crappy situation (to put it lightly).

Kendra said...

I have been following your blog for a while lately but have not posted a comment. Just wanted you to know that I am praying for you, sorry you have to make such a hard and crappy decision.

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