a lesson in feeding tubes

Tomorrow 'Catie' will be having surgery at 7.30am to close her feeding tube opening.  Surgery is rarely necessary...but she needs it.  Pray for her!


On the occasion of officially being done with the tubes (wahoo!) I thought I would take a moment to educate others on what exactly we dealt with (she dealt with) in the tube department.

Catie was in NICU for the first four months of her life.  I am not certain when exactly the feeding tube was placed, but I believe it was closer to the end of her stay.  Due to her drug addiction she was not feeding well and subsequently classified as failure to thrive. 

When I first met Catie, she had a GJ Tube.  It was a long tube, dangling from her body that had three ports.  One for the balloon (which is blown up inside her stomach to keep the tube in place), one for her G (gastric or stomach) port and one for the J (Jejunum) port.  No one is quite sure why the doctors felt Catie needed the additional J port, rather than just a stomach port, but the assumption is that babies are less likely to deal with reflux from medications when they are sent down the J port.  Catie and her WONDERFUL first foster mom worked hard together to wean from tube feeding to where she was taking in enough calories by mouth. 

What her GJ Tube looked like from the outside

It was surgically inserted into her Stomach and Jejunum

We did pretty well with the JG tube.  We normally dressed her in a onesie so she or our other kids could not pull it.  By the time she entered our care, she was eating exclusively by mouth and no longer receiving any meds.  Our responsibilities included daily care of the tube (flushing it with tap water) and care of her stoma (cleaning her opening as it was quite leaky and irritated).  So, despite the non use of the tube, doctors wanted to keep it in until fears of her weight gain issues had passed.  The JG tube remained in...until the wonderful day when she was not wearing a onesie and I picked her up out of the exersaucer.  Suddenly I was soaked.  I thought she had a messy diaper and I looked down and 'aaaagggghhhhh'.  I had pulled out her tube.  A trip to our local ER and they placed a temporary catheter to hold the stoma open.  A week later and a trip to the children's hospital further away, and Catie was downgraded to MicKey G tube.  If she needed to have the J portion reinserted, it would have had to be done surgically by scope.  Fortunately, the Mic Key tube insertion was a quick process in the doctors office.  I learned how to insert it, in the event it was pulled out. 

The Mic Key tube was SO much nicer.  So, as before, responsibilities were flushing the tube, cleaning the stoma. checking the balloon fluid level and on occasion, removing the tube to check for leaks or replacing it. 

Catie had the Mic Key tube up until December, when I begged her doctor to get rid of it altogether.  There is no way in haities I was going to mess up her progress and put food in that thing.  No set backs here buddy!  Her weight gain was still slow, but consistent with her growth, so he agreed.  Removal was simple.  I got home that night and took it out.  I put a gauze on top and put her to bed.  Instructions were if it had not closed in 48 hours I may have to come back and get a stitch. 

Well...something got lost in doctor lingo.  After three days I discovered a small leak.  For the last several weeks I have lovingly referred to her site as her blow hole.  I have had to keep it covered and tomorrow it will finally be surgically closed.  Not quite 'just a stitch' but a simple procedure supposedly.

So...hopefully you have enjoyed your brief lesson on feeding tubes.  As I have never fed through a feeding tube, I can't be of too much help.  We have some fancy equipment in our garage and I have learned words such as bolus, that never really applied to us.  BUT, if you ever encounter a child with a tube, Be Not Afraid! 

NaPro Surgery #3

Just a quick update,
surgery lasted 4.5 hours. Grade 2 endo, adhesions, some kind of stem thing?? He removed 95% of it. Recovery lasted 4 more hours than I was expecting (5 total hours) and they didn't do as good a job managing my anesthesia nausea - that I warned them about.

Dr Stegman is amazing. As a surgeon, I adore him. He prayed with me a quite extensive prayer before surgery, entrusting me to Mary, praying for St Gerard's intercession. Very moving. I also asked/begged him to please get whatever you can get as I don't think I could do the laparotomy again. I am grateful he did because it would be shear misery waking up after a 20 min surgery again.

Dr Hilgers had put a gortex sheath on my uterus which didn't stay in place to do it's job. Therefore I have a crumpled piece of gortex that remains around the bottom of my uterus (Dr S couln't do anything laprascopically about it).

Recovery is much rougher than I was expecting. I am so grateful for friends that have stepped in (with no warning) to watch H and provide meals. I was not anticipating being "under the knife" again so soon (3 years). I will try to provide more thoughts at a future (non drug induced) blog. :)

More Coffee equals more blogging

So it is 11:47pm as I start this. Tomorrow, our family schedule says 8am Daily Mass. I need to go to bed, but I started perusing blogs. It reminded me, I should start sending a little more love out to the blogworld.

We had my cousin (goddaughter) and her family over for dinner tonight. It was a baptism anniversary dinner (thanks Steve & Becky for the idea). Time flies and I can't believe it has been 12 years since I first became a godmother. We were also blessed to have her stay with us for two days as a live in babysitter. I highly recommend 12 year old's for stressed out moms!

So tomorrow is 2 days till B day. I joked on facebook that my autobiography should be called "Inside My Bellybutton." This is my 3rd reconstructive bellybutton surgery. I hope they get it right this time! :)

Is anyone still reading?? :)

I am sorry my blogging has slowed down quite dramatically. As H grows (and no thanks to face book) my updates have been very infrequent.

So here is an update:
H is a big girl in training! She has been using her little potty quite successfully for the last two weeks. We started by eliminating pants and diapers a few weeks ago (a benefit of having hardwood floors). She figured it out pretty quickly and especially loves her m&m reward. We have started to incorporate big girl panties and pull ups...and the last couple days she is doing really well staying dry! I love the decrease in diaper laundry. It is great!

In the pursuit of #2....we have surgery scheduled in two weeks. This will be my 4th (but 1st in round 2). Secondary infertility stinks. I was amazed how fast all the infertility feelings flooded back. BUT, having H in our lives is an INCREDIBLE blessing. While I go up and down on the IF roller coaster (again) knowing we have H makes everything a little bit easier.

St Gerard, St Gianna, John Paul II - pray for us!

Miracle Baby...meet Miracle Worker!

We had the chance to see Dr. Hilgers last weekend and snap these priceless pictures. For those of you who don't remember, Dr. Hilgers is the founder of Creighton Model Fertility Care and NaPro (Natural Procreative) technology. He also preformed two of my surgeries, which led to the conception of our miracle babe. Thank you Dr. Hilgers (sniff sniff) - you are truly doing God's work!!