Saturday, December 25, 2010

Hold Onto Jesus

Sadie received a Fisher Price Little People Nativity Set as a birthday present from her grandparents for her birthday.  She loves it, and I use the pieces to bribe her into rolling, reaching, etc. when we do her physical therapy sessions.

Sadie's favorite piece, by far, is baby Jesus.  Once she gets a hold of him, she loses interest in everything else.  Even when I try to get her to reach for a sheep or camel, she still holds him in her free hand.  Nothing I do can persuade her to let go of Jesus.  Last Christmas, we left her in Jesus' hands while she lay in an isolette in the NICU.  How fitting that she holds Jesus in her hands today, and won't let him go.

My prayer for all of you this day is that you take hold of Jesus.  Ignore all others.  Grab on and never let go.

Merry Christmas.

Wednesday, December 22, 2010

Things That Matter (When You're 12)

What do middle schoolers learn on the last day before Christmas break?
  • Ten million Indonesians are Boy Scouts.
  • The lips of a hippo are over 2 feet wide.
  • There are places where, if you unsuccessfully attempt to commit suicide, you can be sentenced to the death penalty.
  • 35% of Americans wad their toilet paper.  54% fold.  The remaining 11%, who knows?

Friday, December 17, 2010

What a difference...

...one year makes.


December 17, 2009
December 17, 2010.
Happy birthday, Sadie!

Saturday, December 4, 2010

Four Stockings


Christmas 2010


If you look at a picture of our Christmas decorations today compared to one year ago, you wouldn't notice much difference.  Things are pretty much decorated the same way.  The tree is in the same spot it's been since we built our house.  There's only one suttle difference--a fourth stocking hanging on the mantle.

The change in our lives is no suttle thing, though.  It was one year ago today that I got a phone call from my doctor while I was at work.  "It's Dr. Marshall.  I don't want you to panic.  I'm just reviewing your 30 week ultrasound.  I think your baby has some kind of cyst in her abdomen.  Probably no big deal, but I'd like to send you to Indianapolis."  When your physician calls personally and tells you not to panic, your first reaction is to panic.  I paged Chris at work and we both told our parents that night.  Things were no longer perfect.  I spent the next few days researching urachal cysts, and my greatest fear was that after delivery my baby would have a needle put in her belly to drain off some fluid. 

We of course had no idea how serious things truly were, or that two weeks later we would be having our baby.

Last year on Christmas Day, one member of our family was in the NICU while the rest of us celebrated at the Ronald McDonald House.  It was heartbreaking.  Back home, our tree sat in a dark and empty house.  Three stockings on the mantle were a symbol of our unpreparedness for the events in our lives.  It hardly seems that a year has passed.  In just two weeks we will be celebrating Sadie's birthday.  In three weeks, we'll be celebrating the birth of our King.  Last year on Christmas Day we said a prayer at the breafast table that we'd all be together in 2010.  God was faithful to hear and answer our prayers, and this year we hung that fourth stocking on the mantle with the others.   


Tuesday, November 23, 2010

Winding Down...

Sadie had (yet another) procedure at Riley yesterday.  She had a scope of her "anatomy" with the surgeon and urologist.  They were both pleased with her progress.  The urologist asked how Sadie was doing with peeing on her own.  (She's been allowed to pee in her diaper, and we just emptied her clamped catheter a couple of times per day to make sure she was emptying well.)  Not to get too technical, but we've had to make sure that she was really emptying her bladder.  Everyone has a little urine left in their bladder after they void, but it shouldn't be too much.  We've never gotten more than 8 ml (less than 2 tsp.) when we've unclamped her catheter.  The urologist couldn't believe it.  He gave us this look that was part delight, part disbelief, and part, 'you guys must be measuring it wrong.'  Even though her bladder appeared normal when he scoped her yesterday, with the high defect she had the odds of it actually functioning were not spectacular.

Once again, Sadie doesn't care that the odds are against her.

What was supposed to be a quick-scope-and-home-before-lunch turned into another all-day marathon at the hospital.  The urologist really wanted to test her bladder by doing a test called a voiding cystourethrogram (VCUG), so after being discharged from outpatient surgery we headed to his office, and then to x-ray.  Dye was injected through her catheter and into her bladder, and the radiologist watched while her bladder filled and emptied.  And it emptied completely, so the urologist took out her suprapubic catheter!  Yay! 

Chris and I were talking about all that Sadie has been through in the past 11 months.  She came home weighing 5 lb.  We had to feed her through a feeding tube every 3 hours around the clock.  Then she took thickened milk in a bottle, and finally thin milk.  About the time she started eating normally we had to start in-and-out cathing her, followed by a bout of sepsis and a hospitalization.  Next came physical therapy for gross motor delays.  Then her PSARVUP, dressing changes, two catheters, etc.  And today we are down to just her colostomy (which the surgeon plans to take down in about 6 weeks).

The medical drama is winding down for the first time in over a year.  Things happened so fast that I didn't even have time to process it all.  Now I can't believe that we are approaching 1 year anniversaries of receiving bad news, taking my first ambulance ride, having a premature delivery.  The flashbacks are worse than actually living it.  We struggle to find things to talk about besides doctor appointments, lab results, and bowel and bladder function.  Sadie and I had lunch with my BFF Holly last week, and even with her it was so hard to find nonmedical things to talk about (but we managed to get our girl talk on!).

Sadie's first birthday is fast approaching, but it's like she's been born all over again.  This baby girl is much different from the one we had last year, or even last month.  She has far fewer abdominal appendages for us to creatively hide under her clothing.  She's happier; she talks more and laughs more.  I'll never forget the sting of learning she was dying inside of me, hearing the words "birth defect" used about my child, spending Christmas in the Ronald McDonald House.  But for the first time, things truly feel (mostly) normal.  

Saturday, November 13, 2010

A Good Healer

A cupcake and grumpy lamb on Halloween.

Sadie had her first surgery follow-up appointments this week.  She saw Dr. R (urology) on Monday.  Her foley catheter was removed and her suprapubic catheter was clamped.  We empty the catheter once a day to make sure her bladder is emptying normally on its own.  She saw Dr. S (surgery) on Thursday, and he is concerned that her colostomy is narrowed.  Sadie is now scheduled for a scope of her bladder and bowel in a week.  If her bowel looks good (healed), her colostomy will be taken down.  If not, her colostomy will need to be revised.  Either way, in Dr. S's words, we can expect that she'll be having surgery, "soon."  And "soon" is sooner than we planned.

Dr. R was very pleased with Sadie's progress.  His comment was, "wow, she's a good healer."  I'd love to take credit for that.  I wish I could say that, because of my great detail to the care of her wound, or because my breastmilk contains so many wonderful things to help her heal, Sadie's recovery has been all but flawless.  But I can't.  Nor can I give credit to Sadie for being genetically blessed.  No, Sadie is healed because she rests in the hands of The Great Healer.  Every day we have to surrender her back into His loving arms and trust that He will take care of all of her hurts in ways we never could.  He will wipe every tear, mend every wound, and calm every fear.  Even when Mom and Dad can't.

Monday, October 25, 2010

Pictures and Updates

Okay, so I've not exactly been timely with updating.  We've had a difficult couple of days at home. 

When we came home on Friday we thought it would be a great idea to leave Sadie's catheters attached to the drainage bags.  That way we could keep an eye on her output.  We moved her crib into our room so I could keep an eye on her throughout the night so she wouldn't yank on her tubes.  Consequently, no one slept all night.  Saturday morning we ditched the drainage bag plan and double-diapered.  (We put one diaper over her dressing and a size larger diaper over the top of that into which the catheters drained.)  Saturday, the crib went back into the nursery.  I stressed all day Saturday and Sunday about the fact that Sadie was neither eating nor pooping.  Sunday night we were up until about 4:30 am.  So, today, we're all an exhausted mess!

I decided that it was about time for Sadie to get, "The Diana Treatment."  When I worked in critical care, I got made fun of by one particular male nurse for administering The Diana Treatment to all of my patients.  The Diana Treatment is as follows:
1.  Patients are not allowed to refuse a bath.
2.  At least one, but preferrably two, baths will be administered while under Diana's care.
3.  Every part of said patient will be scrubbed, including hair, teeth (false or real), nails, and so on.  Glasses will be washed and placed on the patient's face whether or not the patient is in a coma.
4.  Patients must wear lotion, powder, and deodorant.  No exceptions.
5.  Any open area or sutured area will be slathered in antibiotic ointment. 
6.  Patients will receive pain medication at completion of The Diana Treatment and are thereby expected to rest.  Blinds will be closed and white noise will play in the background.

I don't like dirty patients (or dirty kids).  I've been trying to keep Sadie as clean as possible but she can't tub bathe.  So, I whipped out The Diana Treatment.  I pulled her Penrose drain and, with the help of my two assistants, administered The Diana Treatment (with age-appropriate modifications, of course).  Sadie is now up to Diana Code and is playing on her play mat with Daddy at the present moment.  I don't know about her, but I sure feel better! ; )

So, the Penrose is out, which means no more dressing changes.  We're down to just two catheters and the colostomy.  Things are (almost) back to our old routine.

Finally, pictures.  Enjoy!




Preop snuggles with Daddy...

...and smooches from Mommy.
My first bottle after surgery.

Resting in my room.
Back home, playing with my favorite basket of toys.

Friday, October 22, 2010

Home today? Seriously?

I haven't been good at keeping up-to-date with blogging because: 1.  We were allowed to get Sadie out of her crib yesterday and we held her.  All.  Day.  Long.  and:  2.  We were surprised to receive word this morning that we were being discharged today.  Here are the details of post-op days 2 and 3, and I'll post pictures tomorrow.

Sadie will now be followed by a nephrologist because she has metabolic acidosis.  Since her bowel was connected to her bladder, her bowel was absorbing urine (the bowel absorbs by design, no matter what's in it).  She required bicarb in her IV to stabilize her CO2 levels.  Since the IV is out, she'll now be taking bicarb orally.  We have bloodwork in 6 weeks and follow up in 3 months.

Sadie came home with two catheters.  Both are sutured in place.  The foley catheter, which is the more traditional version, will remain in place for at least two weeks.  The other catheter, a suprapubic catheter, goes through her abdomen and into her bladder.  It will stay in awhile longer.  When the foley comes out, the suprapubic will be capped to allow her bladder to try to work in a normal way.  If her bladder does not empty properly she can still be drained with the suprapubic.  This will be a test of exactly how much bladder function she has.  The vesicostomy was taken down with this procedure.

Sadie has a Penrose drain in her lower abdomen.  This allows blood and fluid that may accumulate to drain to the outside.  The drain comes out Monday.  (Since I'm an RN, we're able to take the drain out at home instead of driving back to Indy to have it pulled.)  She wears an extensive dressing until the drain comes out.

We will see the general surgeon in two weeks.  We'll develop a plan for letting her heal/dilating her bottom/scheduling our next surgery.  She'll still have a colostomy for 2-3 months until she is healed and dilated fully, and then it's back to Riley.

More details after we unpack.......

Thursday, October 21, 2010

Another Good Night

Sadie had a low-grade fever last night before bed, but the surgeon was not concerned.  Otherwise, everyhing has been going very well.  We had her out of the crib and Chris held her for awhile.  (His 31st birthday was yesterday, and holding Sadie was a pretty wonderful present!)  She ate a little pedialyte and a little breast milk.  Our goals today are to get her moving and eating a little more.  She's still in the mermaid wrap but I'd like to get her out of the crib more today. 

Sadie slept all night without requiring any pain medicine.  She only woke up this morning when her roomie started crying.  She just had a dose of morphine and once she's more comfortable I'm going to try to feed her.  The surgeons and urology have already been through and things look great from their perspective.  I'll update later as more news filters in!

Wednesday, October 20, 2010

Counting Our Blessings

Sadie continues to rest today.  She only occasionally wakes and fusses, and one of us gets in the crib with her and snuggles her until she's calm again.  She's taken just over 1 oz. of Pedialyte.  We're hoping to advance her diet so she's taking breast milk by this evening, and maybe baby food in a couple of days.

Since things have been quiet, today has been a good day to reflect on the ways in which this experience has been a blessing.  We have witnessed so many miracles throughout this process.  It's truly amazing.  I just wanted to share a few with you.

1.  My first OB did what was to be our final ultrasound at 21 weeks.  Because he and I didn't see eye to eye on treatment of my blood pressure, I decided to switch OB's at 26 weeks.  The new OB wanted another ultrasound since we were new patients.  That ultrasound saved Sadie's life.  So, having a bad doctor can be a blessing!
2.  Sadie's Rainbow.  I think everyone knows how precious that photo is to us.  If not, read our first post.
3.  Sadie's birth defect occurs in 1 out of 50,000 births (1 in 20,000 live female births).  There are three specialists in the world who are considered to be experts at treating persistent cloaca.  One is in Cincinnati.  One is in Indianapolis.  One is in Italy.  Geographically, we are right between Cincy and Indy.  We have less than a two hour commute to either hospital.
4.  We witnessed prayers ascending to heaven for our baby on a scale we'd never seen before.  Sadie's story has spread as far as Australia (we got a card and an angel from someone there).  Those intercessory prayers for our daughter's health carried our entire family at those times when we could not carry ourselves.
5.  We are soft-hearted people who love the Lord.  But this experience has softened us so much more.  We have more compassion toward others.  We pray, not just in an obligatory manner, but with fervor.  Our family is stronger in our faith than ever before because of it.

I would not change one minute of the events of the last ten months of our lives.  It is difficult to see Sadie in pain, but we know that pain is fleeting.  Soon, she'll be her opinionated little self again, throwing toys and pulling Mama's hair.  I can't wait to see how God plans to use her life.

Tuesday, October 19, 2010

What We Know

Sadie had all of the anatomy needed to complete her reconstruction, which is good news.  The only concern is that the common channel (the opening created by three fused organs) was about 5-6 cm long.  The longer the channel, the more likely she'll have long-term problems.  Ideally the channel would be 3 cm.  Worst case scenario is 10 or more cm.  So we're kind of in the middle of the road as far as that goes.  We'll have to wait and see how she recovers.  Still hoping for the best, and trying to accept what we cannot change.

Sadie has lots of new tubes.  She has a central line (yay!) so no worries about anymore sticks for IV's or blood draws.  She has two catheters, each in the bladder.  One goes through her abdominal wall.   She's in a mermaid wrap to keep her legs immobilized.  Her pain is so far well-controlled.  We're allowed to hold her but we've decided just to let her sleep.  She'll be allowed to start eating in the morning.

We're all going to try to get some rest tonight....

After 9 hours....

Sadie is out of surgery and headed to recovery!!

Surgery Update

The pull-through is complete.  Sadie did require a unit of blood, not because she lost a lot of blood but more to prevent complications since she's already anemic.  We talked to the anesthesiologist on the phone and everything is going well so far.  Dr. R started the TUM about an hour ago.  Both the surgeon and the urologist will talk to us when the entire procedure is complete.

The Big Day

After ten months and two days, the moment has finally come.  Sadie was taken back to surgery about thirty minutes ago for her PSARVUP.  We're with our family and pastor in the surgery waiting area, biding our time....

Last night was rough.  Sadie needed a bowel prep, which was put in an NG tube.  It took three tries to get an NG down and secured well enough that she couldn't rip it out.  She also had to have her blood drawn 3 times.  At 3 am, when she'd had no results from the bowel prep, the surgeon ordered an irrigation of her colostomy.  That also produced essentially nothing.  To top it all off, we got a roommate.  Poor baby was so exhausted.

The plan:  First, the surgeon will place a central line and repair her bowel.  Then, the urologist will repair her urinary and reproductive organs utilizing total urogenital mobilization (TUM), which is a procedure he has perfected and performs worldwide.  Her vesicostomy will be closed.  Finally, the anesthesiologist will administer a caudal block, which will provide up to 18 hours of pain relief postoperatively.

Keep praying.  We'll update when we know something.

Monday, October 18, 2010

Admitted

Sadie has been admitted and, so far, things are going smoothly.  We got a corner room right next to the parent shower, and so far we don't have a roommate.  Sadie's IV is in and her blood has been drawn.  She's only allowed Pediasure to eat.  We haven't started the bowel prep yet. 

We also got a room at the Ronald McDonald House, which is such a blessing.  Since only one parent is allowed to stay, the other can stay across the street with a "real" bed, shower, kitchen, etc.  Chris and I will probably be taking turns.  This also means that Elena can come down and stay with us this weekend (hopefully).

So far we've seen urology and anesthesia.  We're waiting on neurosurgery, general surgery, and nephrology.  I'm sure they'll all be by tonight. 

I've been holding Sadie for over an hour while she napped.  I just handed her off to Daddy for a snuggle and a bottle of Pedialyte.  We're just trying to keep things calm and keep Sadie on her normal schedule today. 

We've already experienced so many answers to prayer.  Please continue to pray for Sadie's safety, and pray for all of the staff who are caring for her.  Selfishly, I'm also praying that we don't get a roommate. 

I'll update if there are any changes tonight.

Sunday, October 17, 2010

Philippians 4:6-7

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

Wednesday, October 13, 2010

Surgery Plans

Sadie will be admitted to Riley on Monday, Oct. 18.  She has another UTI, so she'll receive 3 days of antibiotics at home before she's admitted.  Her CO2 levels continue to be low, so nephrology will be visiting before surgery as well.  She'll probably receive some bicarb before surgery to correct it.  We don't know entirely what will happen on the 18th.  I'm hoping she'll have another PICC line placed, and she'll have to do a bowel prep, which means another NG tube.  All of the docs will come by (nephrology, urology, surgery, neurosurgery) to explain things one last time.  We'll be making that dreaded walk down to the second floor for surgery at around 8 am on Tuesday, Oct. 19.  We aren't sure what condition she'll be in postoperatively.  Many girls do quite well and are even eating that same night.  Some spend the night in the PICU on the vent.  I guess we'll have to wait and see.  We're preparing for the worst, hoping for the best, and waiting....

Thursday, October 7, 2010

Wearing it on my sleeve

In just under two weeks, Sadie will be facing major surgery.

I'm not ready.

I'm wearing my heart on my sleeve these days.  I don't want to be in that world again.  I love Riley Hospital, and I praise God for the wonderful staff there.  But right now, children's hospitals are just places where babies die.  I don't want to go back to the place where hope and despair walk hand-in-hand down the hallways.  Some who are inside those walls are singing.  Some are wailing.  For all, the world outside stops.  Anything that does not pertain to their child's life is inconsequential.  Inside those walls, there's no such thing as a simple test or a minor procdure. The days spent in the hospital can only fall into two categories--good and devastating.  And regardless of the outcome, your life is never the same.  Ever.

I don't want Sadie to endure multiple sticks to get blood drawn or an IV started.  I don't want her to have an NG tube.  I don't want to give her to the surgeons.  I don't want to wait for multiple hours in the waiting room, scared.  I don't want to see her swollen and intubated with multiple invasive lines.  I don't want to be denied the opportunity to hold her in my arms.  I don't want her to bear the inevitable pain she faces.  I didn't want to be in the NICU club.  I didn't want to be a Riley mom.  I never wanted any of this.  But the fact is that Sadie's body in its current state will not sustain her.  This has to happen.

Having a child who was critically ill changes the way you feel about sick babies.  Before, if I heard that someone lost a child it made me sad.  Now, I take it personally.  I can hardly function at work.  I spend a day crying.  Today, the angels rejoiced as baby Joshua Haskins was welcomed home into the loving arms of Jesus.  Sweet Joshua, who only ever knew life in the NICU.  What glory he must be experiencing at this moment!  What wonder and joy!  And yet, the Father is grieving for his mom and dad who are left behind for now.  He is joined in Heaven by many other babies I've been following.  Baby Olivia.  Baby Malachi.  Baby Ewan.  Baby Gwenivere.

Why, God, have you chosen our family to walk this path?  You spared our precious Sadie, and yet you have not spared so many other precious ones.  We rejoice in the knowledge that all of these babies have perfect and glorified bodies.  Yet it doesn't lessen the pain in the hearts of those who remain.  You, oh Lord, who knows the pain of losing a son, please send comfort to Jill and Shane Haskins and all of the other families who are grieving.

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."

Monday, August 23, 2010

State Fair and Updates

We are so proud of Elena for having two projects make it to the state fair this year!  Saturday our family headed down to Indianapolis to check things out.  We had a great time, and the cloudy weather kept the temperature cool.  Sadie did well.  She even slept through our trip through the hog barn.

Sadie saw Dr. R last week.  Her left kidney is progressively dilating.  Dr. R doesn't think her kidney is any acute danger but he does not want any further delays with her surgery.  We have increased the clean intermittent caths to 2-3 times per day, since he thinks her full channel is pressing on her left ureter and causing urine to back up into the kidney.  We have more imaging studies on Sept. 10 to see if things are improving.  We have an appointment with the surgeon tomorrow at Riley North. 

PSARVUP in 8 weeks!

Sunday, August 15, 2010

"She's your sick baby?"

We hear that question all the time.  Sadie looks so great that sometimes it's easy to forget what she's been through, and will go through.  It's been awhile since we've posted any pictures, so here's some of our favorites.



Sunday, August 8, 2010

A Week of Firsts

This week has been an emotional roller coaster as we've had to face new challenges in Sadie's life.  This week Sadie got sick with vomiting and high fevers.  Now, we realize as parents of an infant that we are lucky to have made it this long without her coming down with anything.  But she's not a typical infant, which made it scary.  Unfortunately, this led to Sadie's first readmission to Riley.  She'd been sick since Monday, and then on Wednesday she started having stool coming out of places it shouldn't have been.  After contacting the urologist on call we headed to the ER and Sadie was admitted at about 4 am on Thursday.  Sadie had a PICC line placed on Thursday afternoon once the surgeon decided a trip to the OR wasn't necessary.  She spent two days receiving IV fluids and antibiotics.  We came home yesterday afternoon.  We now have to in-and-out cath her once daily and we can no longer put a pouch over both her colostomy and mucus fistula, which makes it difficult to keep the appliance on for longer than a few hours.  She's also now on Septra as her chronic antibiotic, which is a change from the Amoxil she was on.  So for now, we just have to get through the next 10 weeks until surgery without any further setbacks.

On a lighter note, Sadie also got her first tooth!  She's completely obsessed with rubbing her tongue over it and she tries to hide it when we attempt to peek in her mouth.

Tuesday, July 27, 2010

A Long Day at Riley

Our day at Riley yesterday was incredibly draining on all of us.  Our day started at 4:15 am.  As prep for the anesthesia, Sadie was only allowed clear liquids, and she was not interested in the diluted apple juice we offered her.  I was prepared for two hours of screaming during the car ride down, but she tolerated the lack of milk much better than I expected.  I was thankful that anesthesia put her to sleep with a mask before attempting to put in an IV--all of the chub kind of makes her a hard stick.  We were allowed to stay with her until she was asleep and we went back into recovery as soon as she was awake.  Things went smoothly with anesthesia and the MRI, but she did not wake up a happy camper.  At all.  After about 30 minutes she was allowed breast milk, which improved the situation, but she still wailed every time the nurse came in the room. 

Chris and I had just enough time to eat lunch before her second appointment.  We hit the cafeteria and headed to Dr. R's office for a urodynamics study.  A catheter was placed in Sadie's vesicostomy and another in her colostomy.  Contrast filled her bladder while the nurse took measurements.  Things seemed to be going well until the fluoroscopy image revealed that all of the contrast/urine did not empty.  We assumed it was still residual in her bladder, but the nurse was unable to remove it even with the catheter.  We were taken to an exam room and ultrasound images were taken, and a second nurse cathed her vesicostomy.  The images still showed urine.  Dr. R's suspicion was that the urine was collecting somewhere other than her bladder, and he was right.  A catheter inserted into her common channel produced 129 ml of urine.  Her bladder can hold about 40 ml, so she had about 3 times her bladder capacity sitting behind her bladder.  (Probably not too comfortable for poor Sadie.)  The urine was also very cloudy and immediately tested positive for infection, so she got a shot of Gentamycin and a prescription for Keflex until the culture comes back.

Sadie had long since lost her patience when Dr. R informed us we would need to start in-and-out cathing her at home.  The nurse came in to instruct us on the procedure.  I finally broke my silence and announced that I was an RN.  I think she was relieved to not have to instruct a "newbie" on such a delicate procedure at the end of her work day.  Dr. R also wanted more bloodwork, but we simply could not take any more pain being inflicted on our baby.  Twelve hours later, after caths, anesthesia, IV's, test after test, we finally headed home.  Sadie completely shut down.  She was so sound asleep the entire two hours home.  I don't think a freight train would have stirred her.

What we learned yesterday was that Sadie's syrinx is still present in her spine.   Dr. R will be following up with Dr. B, her neurosurgeon.  (We don't have all the MRI results yet.)  We are also assuming that, with the in-and-out caths, Sadie's bowel won't have the opportunity to absorb urine and her CO2 will improve.  Her bladder contractions are also strong, which is a good sign.  So, we are waiting on culture and MRI results at this point.  Sadie has more bloodwork and another ultrasound in a couple of weeks.

Thursday, July 15, 2010

New Surgery Date (Again)

The third time is the charm, right?

Our new surgery date for Sadie's PSARVUP is Oct. 19.  She will be admitted on Oct. 18.  Hopefully there won't be any more changes.

Tuesday, July 13, 2010

Steady Wins the Race

While Sadie is growing physically without difficulty, her developmental progress is starting to lag.  At seven months, she is not rolling or using her hands across the midline of her body.  These were concerns that I discussed at our developmental pediatrics appointment today, and Dr. D agreed that she needs more intervention.  We may finally be able to get First Steps involved for some at-home therapy.  She has plenty of time to catch up developmentally, so we're just plugging along and taking the little victories as we get them.   Otherwise, things are going great.  Besides her appointment, Sadie also had some bloodwork drawn.  I'm anxiously awaiting the results to see if her anemia has improved.  Sadie weighed in at an impressive 16 lb. 10 oz.!  She's still breastfeeding and has started to accept cereal and veggies.

In two weeks, Sadie will be having an MRI under general anesthesia.  Following that, she will have a urodynamics study and an appointment with the urologist.  We're pretty nervous about it, but even more nervous that we're down to just two months until surgery.

4H judging starts tomorrow for Elena, and unbelievably, we picked up her school supply list for the fall.  What happened to our summer?

On a sad note, I'm asking our family and friends to please pray for the Kaufman family.  Their baby, Gwenivere, was born prematurely at about 24 weeks (I think).  She had been at Riley for many weeks and had made it up to 4 lb., but sadly she developed pneumonia and passed away on Saturday.  Her daddy and I grew up in church together, and I know that his heart must be devastated.  I pray that they will take comfort knowing that she rests in Jesus' hands until they join her in heaven.

Sunday, June 27, 2010

Summer Fun

Summer has been a busy time for our family.  Elena has been spending lots of nights away from home with friends and family, and this week she's away at camp.  She's also putting the finishing touches on her 4H projects, as the fair is in just a couple of weeks.  Chris and I have been busy with work and church.  As for Sadie, she is growing and changing every day.  She's not able to roll but she's sitting well with support.  She's eating cereal and got her first taste of peas today, which she accepted better than we expected.  She loves to babble, chew, play with her favorite toys, and other normal baby stuff.  She's also discovered her colostomy, so our diaper changes are now performed in record time!  In the time since her anemia was discovered and treated her personality has changed a lot.  (I think she just never felt well but didn't know why or how to express it.)   

We have a busy couple of weeks ahead.  This week Sadie will have more blood drawn.  Dr. R (urology) was concerned that her carbon dioxide was a little low last time.  She's also due for more vaccines at her next check at the pediatrician this week.  Until now, I haven't been brave enough to take her out for professional portraits; we have an appointment on July 5th for those.  We return to Developmental Pediatrics on July 13.  On July 26 we have another big day at Riley.  We start in the morning with an MRI under general anesthesia.  This will help the doctors evaluate the syrinx in her spine, as well as provide some road-mapping for her PSARVUP.  Following the MRI she will have a urodynamics study to evaluate her bladder function, followed by an appointment with Dr. R.  We are very nervous, but in some ways this day will be a blessing for us.  I am not looking forward to the IV's, ventilator, inability to eat, etc. that come with anesthesia.  But at the same time it will be a good "trial run" for Sadie's upcoming surgery.  Knowledge and experience are power, and the more we are back in the children's hospital environment, the easier it will be for all of us.

In the meantime, we are just trying to fill our summer with as many good memories as possible.  We won't soon forget the difficulties of the last seven months.  But when we look back on this summer, I also want to remember the little joys in Sadie's life--chubby little legs wearing shorts, the sensation of grass on bare feet for the first time, the intriguing sound of birds, the first smell of roses, the sights and sounds of her first Fourth of July.  That's what we'll remember.

Monday, June 14, 2010

Dedication

Yesterday was Sadie's dedication at Anderson First Friends Church.  We're pictured here with our Pastor, Jack Holliday.  What a blessing to have Pastor Jack; the man who performed our wedding ceremony, and who drove to IU and Riley to pray with us, was also there to perform the dedication ceremony.  We are blessed with such a wonderful church family who supported us through the darkest hours.  Sadie is living proof of the power of prayer.  To God be the glory for the great things He has done!  As Elena and our extended family and friends stood with us pledging to raise this child as God wills, we were reminded of what a tremendous responsibility has been placed upon us.  Not only do we have a baby with special health needs, we have to raise her in a world that is often dark.  Our children were meant to be raised as beacons of light in the darkness.  We pledged both yesterday and every day to fulfill that obligation.  Sadie has been through all of these trials, and experienced so many miracles, to further God's kingdom.  After all, she really belongs to Him.  We are here to guide her, and to be amazed by every moment of her precious life.

Thursday, June 3, 2010

Sadie and her Shadow (Buddy)

If you haven't seen Shadow Buddies dolls, you really should check them out at http://shadowbuddies.org/.  We saw these dolls in the Hollister manual that came with Sadie's ostomy supplies and we knew she had to have one.  She has an Ostomy Buddy, but they have dolls for lots of special needs kids:  cleft palate, dialysis, burn victims, etc.  When Sadie's ostomies are reversed we want to have her surgeons sign her Shadow Buddy's belly.  Since she will be too little to remember, this will be a great way to explain what she went through.

Saturday, May 29, 2010

I Love Prunes! (Not Really)

First of all, I promise that this kid does smile--just not for the camera!

At Sadie's last appointment, she was an incredible 13 lb. 6 oz. and 23 inches long!  She's come so far, but she still has a long way to go.  With persistent cloaca her bowel and bladder communicate.  So recently, Sadie has had urine coming out of her mucus fistula (the opening to the lower part of her bowel).  Dr. Rink told us that this can be expected.  He wanted to check some bloodwork to make sure her bowel wasn't reabsorbing the excess sodium, etc. that her bladder should be emptying.  That could impact her acid-base balance.  When she had her blood drawn we discovered that she is anemic, so she is now taking an iron supplement.  Her pediatrician recommended that she start drinking some prune juice to keep her from getting constipated.  Apparently, we have a potential picky eater on our hands!  She refused the prune juice and shot us a look like we were the worst family in the world.  We tried repeatedly, and she refused repeatedly.  So we tried apple juice with the same results.  I decided to try baby food prunes with a spoon.  You can see how that's going, though we try at least once a day.  (I don't think we're going to see any results, unless prunes can be absorbed through the skin.)  Otherwise, things are going great--we heard Sadie's first big belly laugh last week!

We have a surgery date:  Sept. 22 at 9 am.

Sadie will be admitted on the 21st for bowel prep.  This surgery is called a PSARVUP (posterior sagittal anorectovaginoureteroplasty).  The goals of this surgery are to put everything back together, achieve continence, and allow her the ability to concieve when she's an adult.  Basically the urologist and surgeon will go in together and see what her internal anatomy looks like and reform the channels that should be there.  The combined surgery will take about seven hours, and she'll be in the hospital for about a week.  She will go in a couple of months later and have her vesicostomy and colostomy reversed.  When it's all said and done she will have about six surgeries.  Then, when it's time to potty-train we'll be able to determine if anything further will need to be "tweaked."  She will also be having an MRI of her spine to determine how her syrinx will impact her development, or if it will have any impact at all. 

As for the rest of us, Elena's looking forward to the end of school--3 days left!  Chris is going to the Indianapolis 500 tomorrow, as we do every year.  One of his friends is taking my ticket, since I'm not sure how to make breastfeeding work while watching the greatest spectacle in racing.  Chris and I are just plugging forward, working, and preparing for round 2 at Riley.

Thursday, May 20, 2010

Progress in Pictures





Just a few pictures of Sadie's progress since she came home. Because of the H1N1 restrictions, her big sister was not allowed to visit her in the hospital. So, she didn't get to meet Elena until she came home.
We didn't leave the house much those first few weeks, except to return to Riley for appointments. (That's all we did for awhile!) After initially being told that Sadie's repairs would be done at about age 2, we were surprised in early February to learn that her surgery would be done after 6 months. She was cleared by pulmonology after her first visit. Dr. Rink, her urologist, was very pleased with her progress at her first appointment. Her renal ultrasound revealed two normal kidneys! After mentally preparing ourselves for the possibilty of permanent kidney damage and possibly dialysis, we were told that her kidneys were just fine. Such a huge answer to prayer--one of many. Sadie failed her first swallow evaluation in Feb. but was able to pass in March. After feeding her through an NG tube for about 10 weeks, Sadie was finally able to eat normally. Chris snapped a picture as I took out her NG tube for the last time. I was crying hysterically. It was like we were bringing her home for the first time. Except for her ostomies, she was a fairly normal baby with whom we could do normal things. Since that day Sadie has enjoyed tub baths, walks in her stroller, going to church, etc. We try to keep life as typical as possible, but despite her progress we get frequent reminders that Sadie still faces difficult times.

Thursday, May 13, 2010

A Diagnosis

This is how Sadie looked the first time I got to see her. Her belly had actually been quite a bit bigger. At this point she'd had a catheter in for almost twelve hours, which relieved a lot of the backup. Sadie was 4 lb. 15 oz. at birth and 17 inches long. It would be another week before I was allowed to hold her, but she was roughly the length from my elbow to my wrist. I didn't realize how tiny she was when I looked at her. It wasn't until I saw pictures of myself holding her that I realized how small and fragile she really was.

Shortly after her delivery the medical team at Riley Hospital for Children was able to diagnose Sadie with persistent cloaca. A cloaca is a common channel for the urinary, reproductive, and lower digestive system. All baby girls have it, but during their development in utero the common channel should divide into three separate openings. For an unknown reason Sadie's development stopped and this did not happen, leaving her with a cloaca. I've been an RN for eleven years, and this is something I'd never heard of. (No one at Riley knew what I did for a living, but I'll save that for another post!) As we later learned, this birth defect is seen in about 1 of every 20,000 live female births. Persistent cloaca is also associated with defects of the spine and heart. Sadie's heart was normal but we later learned that she had a small syrinx (fluid-filled area) at her 12th thoracic vertabrae.

Her diagnosis hit us so fast that we didn't have time to process what was happening. In order to allow her bowels and bladder to function, she had to have openings created surgically for her bowel and bladder. The morning after her birth she went to surgery for a colostomy and vesicostomy. Over several days her renal function slowly improved and she was able to take breastmilk through a feeding tube. She was off the ventilator in 5 days and only needed oxygen for a couple of days after that. She spent a total of 17 days in the NICU and another 4 days in the infant unit. After 21 days we were able to bring her home. And that's when the real adventure began!

Wednesday, May 12, 2010

Sadie's Rainbow


Thank you for visiting our blog! This site is intended to keep everyone up-to-date on our family, and to help other families facing similar issues to our own. But first, I'd like to explain why we chose this blog name.


I was 30 weeks pregnant with our youngest daughter, Sadie, when an ultrasound showed what our doctor believed to be a cyst in our baby's abdomen. We were referred to Maternal Fetal Medicine at Community Hospital North in Indianapolis. On December 9, 2009 our physician, Dr. D, gave us devastating news. Sadie's bladder was not draining, and the backup of urine had damaged our kidneys. She had almost no amniotic fluid, she appeared to have a clubbed foot, and she never opened her fists. These were all markers for a chromosomal abnormality. Dr. D's main concern was Trisomy 18, and she recommended doing an amniocentesis.


My husband and I were reeling from the news. After the amnio we sat with our pastor in our room on the 5th floor at Community. The weather was especially foreboding that day. The gray skies spat rain and snow off and on, and the wind was howling. While we tried to come to grips with what had just happened, someone else on the 5th floor was looking outside. A pharmacist named Rob Martin caught a glimpse of a rainbow and photographed it. We didn't see it that day, but the following day Chris saw the image on the Indianapolis Star website. Even though we had no idea what the results of the amnio would be, it was if God was sending us His promise that He was with us, even when we couldn't see Him. The image of that rainbow gave us hope despite our uncertainty.
We would learn three days later that our amnio was normal. However, our baby was still in danger. I was taken to Indiana University Hospital on Dec. 14 and 4 days later our daughter was born. She was 8 weeks premature and had surgery 24 hours after her birth.
I'll be posting frequently to get everyone caught up to where we are today. So check back often!