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.