Feeding the Spica baby, part 2 - breastfeeding

lying flat on the boppy, while still in the hospital

If you don't want to see pictures, turn away.  :)

lying flat on the bed, nursing in her sleep

I had been a bit anxious about breastfeeding Annabelle while in Spica ... but it has worked out just fine.    Again, I don't need to really elaborate, just check out the pictures.

bye bye, Spica

I have many mixed emotions tonight as I write this ...
I am happy that my baby girl's cast is off.  I'm happy we're one step closer to healthy hips.  I'm happy the hardest part is past us. 
It's hard to see my baby in so much pain, though.  I hadn't expected it quite this much.  I had expected her to be in pain after surgery - that just makes sense.  I understood that we should anticipate her to be uncomfortable after the cast removal since she hasn't moved her legs in six weeks.  What I didn't anticipate was the pain she has been in.  It's breaking my heart.  I hate that she's in pain.  I wish I had planned for this possibility in my schedule, seeing as I work tomorrow - it's hard knowing she'll be here and uncomfortable and I won't be able to be with her.

Otherwise, all went well.  Both of her hips are in place - yay!  Her left hip is starting to develop more, which Dr Olney was pleased with.  We go back to see him in six weeks.  Until then, we're back in the Rhino cruiser for 20ish hours a day - 1.5hrs out in the morning and at night and the other hour can accumulate through feedings, diaper changes, car travel, etc ...

Feeding the Spica baby, part 1 - highchair

As with everything else, Annabelle does not fit in our highchair in her Spica cast.  I had done some homework about options for a highchair, given that Annabelle is eating solid food now.  I debated getting one ahead of time, but James suggested we wait until we got home from the hospital.  We lasted about two days, until Annabelle batted my hand away and I was covered in pureed peas. Bleh.

out at Panera :)

This is what we ended up getting for Annabelle, and it works wonderfully.  I got it for $25 at Walmart.  Annabelle's cast is not quite wide enough, hence the pillow.  We had to figure out how to do the straps so that she would be safely strapped in, and it worked out great ... the shoulder straps went around her waist, and the side straps went over her legs I took her out to eat at Panera six days after her surgery.


And ... we were able to put her in it
 after her cast came off, and keep her nice and secure in her brace.  :)

cast is off!!!

Bathing the Spica baby

Spica cast = no bath for six weeks. 
We tried a couple different methods of bathing - because even though Annabelle doesn't get excessively grubby, she still needed bathing.  :)
You can essentially get the gist from the pictures, so I don't need to elaborate.  :)

Diapering the Spica baby

The biggest question everyone has when learning about the Spica cast is "HOW DO YOU DO DIAPERS?????"

It's so very simple.  Pre-spica, I had been quite anxious about this as well, but truthfully, it's easier to diaper a Spica baby than a wiggly baby.  :)

Before going into the hospital for Annabelle's surgery, we didn't buy any diapers, because we weren't sure what we'd need.  After learning how to diaper the day after her surgery (after her catheter came out), we determined the supplies we'd need.

Pre-surgery, Annabelle was in size two diapers.  She ended up needing size one diapers to go under her cast, and size six diapers to go over it.   In the hospital, the size one diapers they had were Pampers Swaddlers, with (insert fanfare) the wetness indicator.  I was never happier about the brilliance of this invention.  There was a means to be able to know whether or not my daughter's diaper was wet (if it was questionable) - without going through the rigmarole of pulling the diaper out of the cast.  Genius.  My husband went to the store and got a small package of both Pampers Swaddlers and Huggies Little Snugglers to determine if one was better than the other.  My answer = YES!  The Pampers were soooooooo much better than the Huggies for our Spica cast.  The Pampers were much wider at the bottom in the crotch area, so they were able to be tucked entirely under the cast, unlike the Huggies.
So ... we opted to spent the extra cash to buy the Pampers Swaddlers while Annabelle is in Spica.

For nighttime, I had read on several other blogs to add an incontinence pad for extra absorption.  Brilliant.  These are what we ended up getting at Target (see below photo), and they worked marvelously.  Annabelle often sleeps 10-12 hrs at night (maybe waking just enough to nurse), so she would often go that long without a diaper change - and she would still wake up dry.
Just make sure to get the moderate absorbency, rather than the light!

Babywearing the Spica baby

When I was pregnant with our first daughter, Charlotte, I did a lot of research on baby products.  I wanted to make sure what we were investing our money in was the safest for our child.  I had initially registered for a Baby Bjorn carrier.  After reading many reviews, however, I learned that that style of carrier may not be the best for a baby's hip development.  I don't know what stuck with me, but after that I didn't feel like that was the best option for us.  I ended up purchasing a Ergo carrier for Charlotte and that investment has proven to be invaluable for us given that we have embarked on a journey with hip dysplasia.


The International Hip Dysplasia Institute  suggests that carriers that allow the baby to sit in the carrier rather than dangle promote a healthier position that does not cause excessive force on the hip joint.
There are lots of different styles of carriers that promote this better positioning.  The ones I can think of off the top of my head would include any Mei Tai style carriers, Beco carriers, Ergo carriers and the Moby GO.
I feel content knowing that when Annabelle is NOT in her Spica, if I have her in our carrier, her hips are well supported and safe.  The Ergo has also come in quite handy because I've been able to wear Annabelle while she is in her Spica.  I wore her almost the entire evening after we came home from the hospital, and I use it anytime we're out shopping, since we have to take her out of her carseat, and she doesn't fit in the cart.  :)

 



*** please note that I am not endorsed by any company to make claims, and I am not specifically promoting a specific type of carrier.

Dressing the Spica baby

Back in June when we had the planned closed reduction and the plan to be in Spica for 12 weeks, I had stocked up on t-shirts and dresses to go over the cast.
Now, given that the seasons have changed, I acquired some long sleeved shirts to go over the cast.

Now that we're several weeks in, however, I've determined that plain shirts are NOT my preferred article of clothing over the Spica.
For starters, the diaper that goes over the cast is 100% visible, and I think it just looks bad.  Even with a huge cloth diaper cover over it to mask the hideousness.  Secondly, I've discovered many a toy inside her cast since the t-shirt makes the top of the cast fair game.
Annabelle is currently in 3-6 month clothing - yes, she's 8 months old.  She's a peanut.  :)

 
So ... I've narrowed down my preferences, and these are:
short or long sleeve onesies - size 9 months snapped over the bottom of the cast
sleepers - size 9 months also, snapped all the way around ... zip sleepers wouldn't work I don't think





I've also managed to streeeeeetch a pair of pants over her cast - this was only for Halloween - I had found a pair of Halloween pants at a garage sale earlier this year, and I really wanted her to wear them on Halloween.  I'm a dork.

2 weeks down, 4 weeks to go

I don't mind the Spica much.  I almost hate to say that, but I don't.
It's cumbersome, it's heavy.  Last week I had a day where I was mad at it ...
It still makes me sad to look at my little one and to know she's not meeting her milestones because of her DDH.  It sucks.  It breaks my heart sometimes.
But I feel so unbelievably blessed to know that our journey is hopefully brief and our daughter will be FULLY HEALED before she will ever know the difference.
Annabelle amazes me.  She is truly a gift from God, and I know He gave her to us to be her parents for a reason.  I cherish her (just as I do her big sister). 
I see God working through us in our situation to bring light to others that come upon this blog.  He has a plan.

Spica roll

Yesterday Annabelle was turning herself pretty well both on her tummy and on her back.  I had thought that by the end of the 6 weeks she'd be rolling and/or crawling just based on how well she was rotating herself yesterday.
This morning, she rolled!  I saw her get some pretty good leverage at one point and thought she might do it, but didn't think it would be this soon!  I was elated.  This girl doesn't let anything hold her back!

Blessings come from raindrops

I think we're nicely getting used to the spica cast.  Annabelle has been sleeping relatively well, she has been eating well, and is a bit less frustrated now about her lack of mobility.  I think her pain is doing a lot better too. 

Looking back on our journey so far, it's been frustrating, it's been full of worry and tears.  We have learned a LOT.  They always say parents with kids with conditions become experts, and while I'm definitely not an expert, I feel relatively well educated ... enough to answer questions when people ask them ...

Every day since Annabelle was born I have been so grateful that her hip dysplasia was caught early.  As Dr Olney has told us, this is often not detected this early in life.  Most of his surgeries are done on older kids, aged 2-3 who are diagnosed after they start walking.  I thank God that Annabelle *WILL NOT* remember the Pavlik Harness.  She won't remember the Rhino Cruiser, or mommy and daddy twice handing her over to the OR nurse.   She won't remember the Spica Cast, she won't remember the pain.  She will remember the stories we tell her down the road, and how much love her mommy & daddy had for her through this whole journey. 

The few weeks before Annabelle's surgery, she cut six teeth, to bring her total to EIGHT.  Those few weeks were frustrating beyond belief.  A few days before her surgery I decided that her cutting her teeth then was a blessing.  She endured that discomfort prior to surgery and going into her spica cast.  Now I don't have to worry that her fussiness/discomfort is from incision pain or from the spica. 

While we were waiting outside the recovery room for Annabelle to be transported to her room, there was a family with a little boy that looked to be about two years old.  His mommy was explaining to him that he had to walk with the "nice nurse" and she would see him afterwards.  I feel so blessed to not have had to explain to my daughter why I was sending her away.  To not wonder if she would look at me afterwards wondering why I sent her off to be in pain.  The last glimpse I have in my head of her being taken to surgery, is her smiling at the OR nurse while playing with her hat.

I am also extremely thankful that the closed reduction was unsuccessful.  We didn't have to endure 3 months in spica, with a cast change at 6 weeks over the hottest summer on record. 

All in all, I am so, so, so grateful that the condition our daughter has is FIXABLE, CURABLE, and something that we will be able to put behind us.

we are home!

I'm glad to be home with my baby but a bit nervous to learn how to take care of her at home ... at the hospital everything is a bit more adapted to her ... at home, we have to figure out what works!

Annabelle is doing well now, she is still in some pain but we're trying to keep on top of it ... she's nursing well, and she ate babyfood this morning as eagerly as she always does.  She's back to smiling frequently, but is definitely more subdued.  She wants her mama all the time ... 

Good morning, beautiful

Morning smiles

attempted tummy time

Meet the Spica

playing with daddy

going home!
Yes, I did match her dress to her cast, I had bought this
dress before her attempted closed reduction as her
"Going Home outfit"

Photo with daddy!

Riding home!  Her new rented Britax Hippo carseat ...
She looks uncomfortable,
but she actually slept the whole way home

Open Reduction and Capsulorrhaphy

I'm so glad today is finished.
Annabelle had her surgery, an open reduction with capsulorrhaphy, which took about 2 hours.  We were able to see her about 4.5 hours after the nurse took her back to the OR.  She was heavily sedated on pain medicine and was occasionally moaning.  It took Annabelle a long time to wake up, and even longer to smile, which is rather unusual for my normally very smiley girl.  We skyped with daddy & big sister this evening and big sister got Annabelle to smile.  It was nice for her to see her baby sister at the hospital and to have a little view of the cast that we've talked about.

Here's a little photo recap of our day:

last bath for six weeks!!!

totally oblivious to the day ahead

waiting for Dr Olney to arrive

arrival in her room

Daddy watching over her

starting to wake up

first time holding her

starting to play

Love my girl.

First smile of the day, Skype with Daddy & big sister

Sweet dreams, sweet girl.

Reduced.

Annabelle's hip is now in the right place for the first time since she was born.

Waiting ...

Annabelle is in surgery.  We got a call a little over an hour ago from the OR nurse saying that they had just started.  Dr Olney anticipated anywhere from 2-3 hours from start to finish, as they'll be applying the cast and I'm assuming it will have to dry.

The wait is hard, and I'm trying to keep myself busy ...

NPO

NPO.
Nil per os.
Nothing by mouth.

Fortunately for the tiniest of patients this is only for a few hours rather than 'after midnight'.

Annabelle was able to have food/formula (which she has never had) until 1:30, she was able to nurse until 2am.  She could have clear liquids (a.k.a. Pedialyte) until 4am.  So... NPO after 4am for a 7:30 surgery doesn't seem so terrible.

I had set my alarm for 1:30 to wake and nurse her, but she woke on her own around 1.  About 2:15 she woke up screaming.  After about 20 minutes of inconsolable baby we determined she was gassy and gave her some gas drops.  A few huge burps later, she fell asleep on my shoulder at about 3am.  I snuggled with her in bed for about 10 minutes and was finally able to get her to take some Pedialyte, although she only took 2.5 ounces.  I was hoping she'd take more so that she'd be a little happier this morning before her surgery, but she passed out hard after that :)
I'm listening to her tiny snoring right now and praying hard. 

Here we go ...

insomnia

I had a hard time sleeping last night.
Tonight, I almost don't want to go to sleep.  I know when I wake up, it will be 'that day'.  October 9th.  This day has been looming for four months.  One step closer to our goal:  healthy hips.

It's feeling real.

I've largely been in denial.  I have moments where I freak out about Annabelle's upcoming surgery, and then they're over.  It was too far away to really freak out about.

Then September hit. 

Then October hit. 

But we still had my cousin Jill's wedding to get through, as her surgery isn't until after the wedding.

The wedding is now over.  I'm packing my bag for the hospital and I'm starting to freak out.  I'm packing teeny tiny t-shirts that I've collected over the last 5 months that she will (hopefully) be able to wear over her cast. 
I'm playing with her tiny legs, savoring her chubby little thighs knowing they'll be out of commission for 6 weeks.

Praying she's not going to be in much pain.  Praying all goes well and this is the last surgery she has to endure.  Praying for peace for myself.  Praying for the doctors and nurses who will care for my little girl. 
Praying ......

cleared

We saw Dr Lively again today, this time for a well baby checkup.  Annabelle has been fever free since early yesterday afternoon, so he saw no need for her to not be able to have surgery next week.  Her labwork all came back normal, so .... here we go!

102.2

102.2

Not a radio station.

Yesterday morning when Annabelle woke she felt hot.  I took her temp and it was 101.8.  A dose of Motrin, it came down to 99.8 and she was her happy little self until around 5pm when her fever spiked again.  We gave her another dose of Motrin and the fever was back up to 101.8 at 8pm.  A dose of Tylenol and she was good until the morning.  She felt super hot when she woke this morning, and her temp was 102.2
I was worried all night last night because I didn't want anything to have to delay her surgery.  I called the pediatrician as soon as the office opened and she saw Dr Lively at 11:30.  It was oddly comforting, because his daughter also had hip dysplasia, although I'm not sure if she had to have surgery or not. 
He couldn't find a cause for Annabelle's high fever, which was a bit frustrating - I was thinking maybe she had an ear infection or something.  He said it could be viral, could be a UTI.  But nothing obvious.  So, we had to collect a urine sample and he sent her off for some lab work.  We're back home now and she's acting a bit more like herself.
More comforting, he reassured me that if for some reason her surgery is delayed due to this (unknown) illness, it's for her health and safety, because the anesthesiologist will want her as healthy as possible prior to intubation - which makes perfect sense.  I don't want to send a sick baby into surgery.  I'm just so anxious already knowing her surgery is one week away, the prospect of having it delayed and having to wait longer is frustrating. 
I'll do what's best for my baby girl though, that's my job.

here we go again ...

We saw Dr Olney today to follow up with Annabelle's left hip and to see him prior to her upcoming surgery ...

Left hip is still in place!  Praise God!  He said it looks perfectly normal for her age.  Right hip is still dislocated which we knew and expected to hear. 

So, in 20 days, she will have her next surgery - an open reduction, in which he will make an incision in the crease of her leg (she can still wear a bikini when she gets older with no visible scar), go into her hip joint, clean the tissue buildup out of the socket that is preventing her hip to be in place, then reduce her hip into the socket, and she will then be put into a spica cast for 6 weeks.  After that, she will return to the rhino cruiser. 

Deep breath.  I am scared beyond belief but know it's one step closer to hearing the words that I so long to hear:  Healthy Hips. 

I was going to be brave.

I was going to be brave.

We did this before, right?  We woke up well before dawn and drove our tiny girl to the hospital for surgery.  We carried her down the hallway knowing we would soon have to hand her over to the OR team.  We handed her over and watched the OR nurse carry her around the corner to the team that would care for her while under anesthesia.  I sobbed as we helplessly took the elevator to the waiting room where I would pace until we got word that she was out of surgery.  We waited in angst as we were waiting to hear her name called so that we could meet her in the recovery room.  I rocked and held my sedated little girl and longed for the time she'd open her eyes and want to nurse again. 

We did this already.  So, next time, no big deal, right?  That's what I've been telling myself. 

I was going to be brave.  With this surgery, we have no what-ifs.  The outcome is definite:  Open reduction, Spica cast for 6 weeks.

So, then why with every passing day that the day gets closer do I get more and more scared?

35 days until we do it again.  35.  That's a fewer number of days than she'll actually in the cast.  When I think about it, I'm nauseous.  I don't want to do this again.  I'm scared to death.

I know her condition is fixable.  I know eventually this will all be behind us.  I know there are far worse case scenarios out there that we could be dealing with.  I know all of this.

It doesn't make me less scared.

I can't tell you what a helpless feeling it is to hand your child over to someone and know that you have absolutely no control over what is about to happen.  I don't want to do it again.  This is what our girl needs, so we will do it again.  And again after that if we need to.

I was going to be brave.

So I'm going to try to be.

Rhino activities

In our Fisher Price Space Saver High Chair

I've been able to help Annabelle do a few more things in her rhino, so I thought I'd share so other people can hopefully have an easier time with their little ones.  

In the Rainforest Jumperoo

In the Rainforest Jumperoo

Wearing a small Halo Sleepsack at night,
brace underneath

Wearing a small Halo Sleepsack

Swinging in the
Fisher Price Papasan Cradle Swing

In our new double stroller:
Baby Jogger City Micro

rhino roll

Since we've been able to allow Annabelle more time out of her brace the last few weeks, she has really gotten mobile! 
She rolled back to front without her brace a couple weeks ago, and the next day, she did it IN her brace - I was shocked!

 
She's also working on her version of crawling, which looks more like digging, as she digs her head into the floor and kicks with her legs until she scoots to whatever object she is trying to reach.  She also rolls like crazy. 
She still isn't crazy mobile when her brace is on, but I'm thankful she's meeting more of her milestones. 
I had initially prayed that she wouldn't become mobile prior to her open reduction/cast placement so that she wouldn't get so frustrated and being unable to move, but it's such a joy to see her exploring and discovering her world.  The 6 weeks in the spica cast will be long and stressful - but they are only 6 weeks.  Only 42 days.  That I can handle.

one in, one out

A couple weeks ago I took Annabelle back to the Orthopedic Dr.  She had an x-ray (she's old enough now - no more ultrasounds!), and we got some reassuring news.  Her left hip is still in place, and looks good - Dr Olney is confident it will continue to stay in place, so she is now allowed 6-8 hrs a day out of her brace, and has no restrictions when out of her brace (except no Johnny Jump-ups).  I promptly put our Jumperoo together that night.  She's still more a fan of the Exersaucer than the Jumperoo, and I feel better about the Exersaucer because she can still wear the brace in it.  I still kinda baby that hip.

Her right hip is still dislocated, which we know and expect.  She'll have her open reduction in October that should fix it.

In the meantime, we're working on weaning her out of her brace, slowly.  She is also now doing physical therapy for her torticollis.  She's still pretty limited on her range of motion, and she detests the stretches we have to do for her.  I'm praying it gets easier as her muscles stretch out.  We have several sets of stretches we have to do 5-6x a day, for at least 5 reps.  So, all-in-all, each stretch 25-30 times a day.  It's a lot, but not that time consuming.  It's just painful to watch her screaming, but to know it's what she needs.  I hate seeing my baby uncomfortable.

Otherwise, all is well!

Babywearing with the Rhino Cruiser, part 2

I had posted earlier that the Ergo carrier worked well with the Rhino.  I've worn Annabelle in it a few times with her brace, and she sometimes will tolerate it, and other times won't.  It's really touch and go.  It's not quite wide enough for her leg span, and I think it sometimes cuts into her legs and makes her uncomfortable.

I found my ring sling, and decided to try her in that.  It's not the ideal carrier for long term wearing, but it worked well with her brace, I used a hip carry similar to how I carried Charlotte when she was ~10 months old.  Annabelle did well in it - I think we'll try this one again!

It's a double-layer Solarveil ring sling from Baby So Smart.  The lint is courtesy of me washing it with a load of towels and accidentally drying it.  This sling is awesome, I bought it for Charlotte specifically to wear her in the pool or shower.  You can scrub a baby right through the fabric with soap!  It also has some UV protection.  :)

our new normal and the answers to some FAQ

I haven't posted for awhile, but there's not much to update!

The last five weeks have been great.  Annabelle is doing fantastic, and we don't really seem to mind her brace at all.  SHE doesn't seem to mind her brace at all.  It's our new normal.  Baby in a brace.  We get some stares occasionally, and I'm always happy to answer questions for the curious minds.

happy girl

We've even managed to fit her in an exersaucer with her brace on, and she loves being in it.  (I doublechecked with the Dr to make sure it was okay, and they said sure!)  She's all about putting everything in her mouth, so having lots of toys at arm's reach is a plus for her :)

dangly legs!

*************
FAQ:

I've had a lot of questions asking after little Annabelle, so I figured I'd make a mass answer:

our tiny girl on the fourth of July

She is doing great.  We are weaning out of her brace, she is allowed out four hours a day, and she loves being out of it.  She is still a bit behind on tummy time stuff, as she still doesn't tolerate it well, but we're catching up!  :)

She *did* go in for her surgery, but while under the general anesthesia, they were unable to put her hip in place.  She will have open surgery in October after she is 6 months old (the Dr won't do the open surgery on younger babies) and they will clean out the hip joint, manually reduce her hip, and cast it there for six weeks.  That *should* be her last surgery.

In the meantime, she is in her brace to keep her left hip stabilized, and provided it stays in place, she will only have surgery on her right hip, however, the nature of the spica cast is to cast both hips.