Wednesday, September 22, 2010

Joshua's Rainbow

I'm asking all of you to remember a very special family today.  Please visit http://fierceandfiesty.blogspot.com/.  Keep sweet Joshua in your prayers.  Also, please pray for his mother, Jill.  I know how hard it was on our family to survive the NICU.  I imagine that it must be one hundred times worse for her right now. 

I was praying for Joshua on my way to work.  As I rounded the corner and pulled into the parking lot, I looked above the office building and saw a beautiful rainbow.  You all know how much rainbows mean to our family (if not, see our first post).  This was Joshua's rainbow.  I wish I could post a picture of it, but all I had was my cell phone.

You can tell me all the science behind rainbows--water and light diffusion, blah blah blah.  I know that a rainbow is a reminder from God that He keeps his promises.  God has Joshua in the palm of His hand, and he will never leave or forsake him.

Tuesday, September 21, 2010

The Ostomy Chronicles

Sounds like some fantasy book series or video game, huh?  Ha ha!

One of the groups I belong to asked me how I was able to keep Sadie's colostomy appliance on for so many days without it coming loose.  After seven months of googling, lots of trial and error, and having exhausted my lifetime stores of patience, we finally have a system that works well for us.

Problem #1:  diapering a vesicostomy.  I have read so many blogs and articles where vesicostomy moms have wrapped their kids up in 2-3 diapers to keep them dry.  Every time I read one of those, I picture "Randy" getting ready for school in, "A Christmas Story."  ("I can't put my arms down!")  Keeping in mind that our baby barely rolls and doesn't crawl yet, we don't double diaper.  We used the Target brand of diapers, "Up and Up," (and believe me, we've tried every brand).  Whatever brand you use, it's helpful to get a size bigger.  The Up and Ups seem to be cut a little higher in the front where vesicostomy kids need it.  We also put 2 pieces of 2x2 gauze over the vesicostomy.  This isn't to acutally catch urine but to wick it down toward the bottom of the diaper.  The gauze cannot stick up over the top edge of the diaper or it will wick urine up, out and onto her clothes.  That's all we have to do to (usually) keep our baby dry both day and night, though some days she does wet through outfits.  She also seems to have more problems with being on her left side because urine runs onto and around her colostomy appliance, which soaks her clothes.

Problem #2:  the mucus fistuala.  Our nemesis.This little doo-dad that should create little disruption has actually caused a lot of problems for us.  We used to put the ostomy appliance over both her colostomy and mucus fistula because there wasn't room between the two to put it just over the colostomy.  (Then stool somehow leaked into her fistula, which got into her bladder, and she ended up in the hospital.)  Also, urine used to come out of her mucus fistula.  There was no other way to keep her dry except to put a bag over it.  We haven't had the urine problem since we've been cathing her common channel twice a day.  We no longer put the ostomy bag over the mucus fistula.  We used to occasionally have problems with drainage from the fistula soaking through gauze and onto her clothes.  Now, we're using Mepilex Border Lite gauze to cover the mucus fistula, and this works great.  It only soaks through the gauze if she has a very large output.  Generally we only have to change it about once every two days, though.

Problem #3:  the colostomy.  This is where we exert most of our energy in terms of Sadie's care, but it's worth it to get 3-5 days out of a single appliance.  Just for reference, Sadie's colostomy is super tiny (about 1/2 inch by 1/4 inch) and is almost completely flush against her skin.  We try to change the appliance at a time when we can give her a bath once the old one is removed.  First, we use a baby wipe to gently peel back the old one, rubbing the wipe between the wafer and her skin.  We will also use an adhesive remover at about every other change, even if we don't see any old adhesive.  This has made a huge difference for us.  Then we give Sadie a bath.  After making sure she is well-rinsed and dry. we apply a barrier skin prep.  We still use the Hollister Pouchkins newborn 2-piece appliance.  Even though Sadie is getting bigger, this works best for her.  I cut the wafer so it's just barely bigger than the outer edge of the pouch's adhesive area.  I put Adapt paste around the colostomy opening on the adhesive side of the wafer and apply the wafer.  I then put a very narrow piece of pink tape along the inside edge border of the wafer, which is our problem area for coming loose.  I put the pouch on top and then my husband holds a hot pack over the wafer for a couple of minutes.  For a hot pack, we just let the tap water run as hot as we can get it, soak a washcloth in the hot water, and put the washcloth in a Ziploc bag to keep the heat in and keep everyone dry.  After a couple of minutes I windowpane more pink tape around all four edges of the wafer and my husband applies heat for another minute or two.  If we have to patch a spot later, we use the skin prep before applying any paste or tape, which I think makes it stick better.  Also, I may be crazy, but i think the wider pink tape (1 1/2 inch, maybe?) is stickier than the narrower tape.  We get the wider roll and just cut it in half lengthwise and it works great.
We still have our days where we only get 12 hours out of an appliance, but they are few and far between. 

We are by no means experts, and every baby is different, but I hope this helps anyone who is struggling with keeping their ostomy baby clean and dry.

Tuesday, September 14, 2010

Updates

Last Friday Sadie had a couple of exams at Riley.  She had another routine ultrasound, and she also had a renogram in Nuclear Medicine.  Chris and I were very nervous to learn the results, since we already knew that Sadie's left kidney was dilating.  Praise God that her kidney actually improved!  The ultrasound showed that the left kidney is still enlarged but decreased from the previous study.  The nuclear medicine study showed that both kidneys had normal uptake and emptying times.  So, we won't be having any more follow-up until Sadie's PSARVUP, which will take place five weeks from today.

Sadie is really taking off developmentally since she started receiving physical therapy through First Steps.  She has been sitting unsupported for about three weeks.  She's very good at rolling from her stomach to her left and onto her back.  We're still working on rolling everywhere else, though!  She also babbles up a storm.  Her favorite word is, "Da Da," though she does say "Ma Ma" when she's ticked off.

Please continue to keep us in your prayers as we spend the next five weeks preparing mentally and physically.  There are several specific things we are asking everyone to pray for.  First of all and most obviously, pray for Sadie's safety during surgery.  She will be in surgery all day; it can take eight to twelve hours.  Pray that the surgeons would be sustained and not grow tired.  Pray for Chris, Elena and I during those many hours in the waiting room.  Pray for adequate pain control and recovery after surgery.  We don't entirely know what's going on inside Sadie's body, and we won't know for sure until that day.  But there are several things that improve her prognosis:  a normal sacrum (got that), normal kidneys (working on that), a short common channel (the channel that connects the organs that are fused together--not sure about that),  and a couple of other things that won't be obvious until she is potty-training.  Please join us in praying for these things.

Sunday, September 12, 2010

9/11

September 11 is a day to reflect on the greatest national tragedy of our lifetime.  It is a day to reflect on the loss, grief and fear that gripped us all nine years ago.  But it is also a day of hope, marking a time when our nation was more united than ever.

This year on 9/11, we attended the 10th Annual Riley Hospital for Children NICU reunion.  The event is always held on the second Saturday in September, and I thought it was very fitting that this year it aligned with the anniversary of the 9/11 attacks.  The NICU experience, after all, is the greatest personal tragedy many families will ever face.  The reunion was a time to reflect on the NICU experience.  While we remember the toll that being in the NICU took on each of our families, we also celebrate the life and hope that came from that experience.  We celebrate in the unity shared with other families who walked that road alongside us.  We rejoice with them in their victories. 

Dodging the rain with Mommy and Elena.
It was wonderful to connect with some of the families we got to know last winter!  We even ran into our NICU neighbor, Graham.  Everything (aside from the weather) was wonderful.
Having lunch with Daddy.






One of the best memories I will take from this day is when Dr. Lemon, former medical director of the NICU, quoted Mother Teresa:
"Life is an opportunity, benefit from it.

Life is beauty, admire it.

Life is a dream, realize it.

Life is a challenge, meet it.

Life is a duty, complete it.

Life is a game, play it.

Life is a promise, fulfill it.

Life is sorrow, overcome it.

Life is a song, sing it.

Life is a struggle, accept it.

Life is a tragedy, confront it.

Life is an adventure, dare it.

Life is luck, make it.

Life is too precious, do not destroy it.

Life is life, fight for it."



 

Thursday, September 2, 2010

"How many am I?"

Out of the blue, yesterday Elena asked me, "Mom, how many am I?"  I had no idea what she was talking about.  She said, "Sadie is 1 in 50,000.  What am I?"  She was referring to how rare Sadie's birth defect is.  Elena is beautiful, strong-willed, intelligent, athletic, and....100% healthy.  How often does that happen?

Without hesitating, I answered, "you're one in a million."