Just Two Little Words

Just two little words ~ Don’t Worry ~ so simple, yet so full of meaning(s).

Don’t worry … does that mean I should ?

Don’t worry … does that mean honest, everything will be all right?

Don’t worry … does that mean just trust, have faith, believe?

Jackjack’s post pelvic osteotomy appointment was yesterday and despite his very loud and sad reaction that made our amazing surgeon feel very, very bad, and every child waiting to see her very, very nervous it sounds like everything is okay. Everything looks good, see you in two months, keep letting him explore as much as he’s able, he still has a long road ahead of him…

Nope, don’t worry about his limp.

Nope, don’t worry about his left foot being on a 90 degree angle to his right.

Nope, don’t worry about his left leg being almost an inch longer.

Nope, don’t worry that we didn’t do an xray “just to check”.

We’ll watch, and we’ll wait and we’ll see … see you in two months, don’t worry.

Ummmmmhhmmm … okay?!

And yet, with just two little words, we have a choice. These two little words give us option(s).

Don’t worry, be happy.

Don’t worry, it is out of your control.

Don’t worry, celebrate every new moment.

Yes, celebrate that your child has overcome challenges that many have not with courage and smiles.

Yes, celebrate every new step your child is taking, even if not entirely “on his own”.

Yes, celebrate that we live in a country with such amazing medical care.

Yes, celebrate that you have the love and support to make it through.

Yes, celebrate.

At this moment, I choose to “just keep swimming”, (we may have watched Finding Nemo more than once over the last year!) due to two very sweet words …

“Don’t worry”

What are you choosing today?

XO,

Steph

Wordless Wednesday - 1st Swing after 13 months casted & braced !!

XO,

Steph

Through to the other side ...

**UPDATE**

Jackjack has had a very, very peaceful night which is exactly what his poor little body needs! When changing his diaper & cleaning him up last night, rolling him caused the pressure from his cast to release & his incision started to bleed heavier. They ended up trimming his cast so a pressure bandage could be placed to help stop the bleeding & this morning it looks like it has started to work :)

His "gravol" has definately worn off during the night & we just got him cleaned up again, given him another dose & he's resting .... sweet boy. I'm praying today will be easier on his little body, that he is able to rest well, start healing.

You know, I honestly, thought I had let go of the anger I originally felt when Jackjack was diagnosed but it returned last night. My anger isn't for me but for Jack ... he has had such a long year & has been nothing but a happy, giggly, loving, little fighter. Knowing that all of this could have been avoided, knowing that this wouldn't, shouldn't be necessary makes me angry, frustrated .... so sad. This happens to so-many-children, please share Jack's story so others won't have to be sitting here, watching their child, wishing that it wasn't so. DDH is so easy to diagnose, this shouldn't happen.

I always say that if I can just make it through to the other side of this ... everything will be okay. Right now, everything is okay & I am feeling blessed to be on the other side! Jackjack is "in the zone, Sullivan", pain free, many tubies not free, & hanging in there!

Last night was the toughest "night before" we've had .... resulting in a very, very sleepy boy by the time surgery came (he didn't fight falling asleep for the first time!). Jackjack seemed to know exactly what was going on when Mommy put on her pretty hat & coat to carry him back to surgery .... he didn't want to let go of Daddy! I was able to hold & talk with him while he was falling asleep ~ I would be lost if I wasn't able to provide our sweet children with this one comfort.

Jackjack's release of his "fair weather friend" (or orchiopexy) went very well. His testicle didn't like to be overly warm, just nice and toasty, so it was easy to find, release & bring down. The little mister's "mister" looks awfully sore & swollen making his cast very tight around the diaper opening.... which has been a gift in itself, putting pressure on his incisions helping them to clot.

His innominate osteotomy went smoothly & was a success!! Dr. J is very happy with how solid his hip is & she only needed to use 2 pins (these will be removed in 6 months). Jackjack's cast is blue .... we realized, after Dr. J came to chat with us, that we didn't request a color & forgot to ask ~ I wonder why ?! His right leg is absolutely free with his cast wrapping around his waist to his armpits, around his right hip & all the way down to his chubby ankle on his left! WOOT WOOT .... I have a feeling he may not be slowed down at all with this one! His epidural will remain in tonight & they will start to wean him slowly tomorrow until he is able to do with a lower dose pain medicine. His vital signs are all stable, he has no sign of fever & has stopped being sick to his wee tummy (knock on wood!).

I am pooped beyond belief (& apologize for the state of this update but I think it makes sense?)& will lie down as soon as I can kick my sweet hubby off of my "bed" ;)

XO,

Steph

You tell him ....

that this is his last “spla-spla” for 6 weeks !!! 

After being freed from his last spica cast, Jackjack had trouble getting used to being in the bath. All that time with the only sensation being his cast, it was just too much for his sweet legs to feel. Now? Now we have trouble getting him out of the tub & every body of water holds the possibility of a “spla-spla” ! 

Surgery has been scheduled to start at 8:40 am with his orchiopexy first, followed by his innominate osteotomy. He should be in the OR for 4 – 5 hours & then we have the what feels like forever wait while he is in recovery. After all is okay, he will be moved into his own room & there we will hang until he is ready to come home …. anywhere from 3 to 6 days. Dr. J will insert an epidural & he’ll be slowly weaned off of it & onto additional pain meds in the 48 hours following his surgery to help manage his pain & muscle spasms. 

I am feeing okay at this moment, knowing that we have done everything, absolutely everything, in our power for his hip to heal on its own. I am feeling okay, knowing that Dr. J will be doing everything she can tomorrow. I am feeling okay, with another 6 weeks in a spica cast. I am feeling okay, knowing that this summer our sweet boy will be able to learn to w-a-l-k !! I am feeling okay, knowing that this has been a very, very long year but that soon he will be without a brace or cast!

We will be able to keep all of you, that love our sweet little man, updated before we are settled in his room …. keep an eye on the upper right hand side (above our family picture). Now that Hipdaddy is home he I can get his fancyschancy phone connected & we’ll be good to go …….  so Jackjack can be on his way to WALKING !!!

"Heal, Hip, Heal"

XO,

Steph

Journal entries from our Caringbridge site ....

THURSDAY, APRIL 17, 2008 09:36 AM, CDT Hi Everyone, We have just received a call cancelling Jack's surgery tomorrow due to his pneumonia. I will explain later today but right now I am going to go crawl into bed & have a nap with our sweet boy ... Love you all, Steph TUESDAY, APRIL 15, 2008 08:49 PM, CDT Hi Everyone, We got a very early call today from the hospital & we went through what I call the 'has your child had' list (again) with the surgical nurse. It's reassuring knowing they are so thorough and yet this is still scary. We are doing well with the reality of treatment, cast and changes to our routine. We have accepted that this is what needs to be done but still ....  What is upsetting is handing our sweet, trusting child over to a room full of people we don't know... yet need to trust. The thought of handing him over & watching someone else carry him down a hall into a strange, cold room full of machines & people in masks is enough to make me not go through with this. Hannah had surgery when she was 2 & I was able to take her into the OR until she was asleep & I pray that I will be able to do this for Jack. He is so little, so sweet & this is so scary .... even when you don't understand. Especially when you don't understand. We need to call surgery on Thursday for our times: when he has to stop all fluids (he has to have only clear fluids after midnight .... poor dude as he STILL wakes every 3 hours for formula! Mommy & Jack will be napping lots this week to store up energy!), time to be at admitting and estimated surgery time. They try to have all 'young ones' into surgery as early as possible during the day. We want to thank you all for your never-ending support & love. There will be days ahead that are great & others that are maybe not so much ... it helps knowing that we can share both. love to you all, Rich & Steph MONDAY, APRIL 14, 2008 10:15 AM, CDT Guess who's turning one !! Jack's birthday isn't until the 20th but we had our big double birthday bash for our *small* family last night :) We are so blessed to have the support and love that we have - that is how we make it through these challenges we keep being 'given' :) Jack was born only 2 days before Hannah & not only was he 'the best birthday present EVER' but he was home in time for her 6th family birthday party last year! Hannah brought this home from school this week & I think it sums things up perfectly .... I giggled & got watery all at the same time! We have amazing children .... When I Got My Baby Brother by Hannah I have a new baby brother. My mom's tummy got bigger and bigger and out came a baby. Then one day my mom got home. Then a baby was in my house. We named him Jack. I feel happy to play with him. I love Jack. and we love you all, Rich & Steph   WEDNESDAY, APRIL 09, 2008 05:52 PM, CDT Hi all, Dr. Jaughin's nurse, Brenda, called today with confirmation that Jack's surgery will be on the 18th. It's hard knowing that they had to bump other children ... not only because their families will now have a longer wait but that Dr. Jaughin felt it necessary. I feel grateful and guilty all at the same time - no wonder I'm tired :) We will get the call for his time slot by this time next week. Our little monkey started to 'crawl' this week! He had been using a stealth roll method (very quiet & fast until he got to where he knew he shouldn't be!) & just this week has modified it to a goofy looking armycrawl/digmygoodtoesin&launchmyselfforward kind of scootch! I have a feeling his cast will not be holding him back either .... As I finished typing the last sentence he's just scootched all the way across the living room & is trying to unplug Richie's computer - Rich's response .... 'You're way too mobile now Dude' (with a laugh to follow!!) We will definately enjoy him moving this week .... go Jack go !! He's had a good week. He is feeling so much better & is back to keep Mommy busy during the day!  Thank you so much for all the messages, phone calls and offers of help. We are again reminded how lucky we are ! Love to you all, Steph & Rich

Once Upon a Time ....

Jack was born April 20, our third baby, head first with "no signs" of hip dysplasia. I share this because he didn't fit into the normal risk factors. Your little bubba is more likely to have CDH if you have a ... first born girl, with breech presentation and/or family history.

Jack had his hips checked at every well baby visit, vaccination and visit to the ER (which included xrays clearly showing his dislocated left hip at 2 months old). Jack's CDH slipped through 12 different people! It was detected one very fateful visit to the Children's Hospital by an amazing radiologist for RSV and pneumonia!

Following are the entries I added to our CaringBridge page right after diagnosis ....

MONDAY, APRIL 07, 2008 12:00 PM, CDT

Okee Doke, here we go!

Jack's appointment went really well this morning. His surgeon is fabulous & will be the same one that saw Jack as an in-patient last week! We have a very good feeling about not only her but the whole ortho clinic!

Jack is scheduled for April 18th to have surgery. Here is the plan ... as of today.

For his right hip, which is stable but dislocates when moved and has a shallow 'cup' (or acetabulum), Dr. Joughin will do a closed reduction (meaning no surgical incisions are needed) into position. Jack's tendons should be loose enough to move this hip fairly easily into the right spot. Our hope for this hip, is that the pressure from the ball on the socket will encourage it to grow & surround the ball of his hip more.

His left hip is a weeee bit more complicated. She will have to make a small incision and 'nip' his tendon as it will be too tight & currently limits movement in this hip. Due to it being completely dislocated since birth, the cup (acetabulum) has not formed. There appears to be a little lip where it should be .... so the plan is to place the ball up against this lip to encourage it to grow (grow baby grow!).

Once both hips are in place they will cast Jack with his new 'frog legs' from armpit to ankle for approximately 6 months. He will need to go into the OR every 6 weeks to check the progress of his hips & get a new cast.

This is what would be our best outcome for the 18th & the one we really, really want!

This webpage has a really good visual for those of you more like me :) Jack's right hip looks like picture C and his left hip looks like picture E.

http://www.ergobabycarrier.com/press/2007/11/hip-dysplasia.html

Now ... IF Dr. Joughin is unable to get Jack's hips into a good position he will need an open reduction. An open reduction is when the hip is opened and the surgeons can physically see & place Jack's hips rather than using xray. The risks to this surgery are higher and recovery would be longer. So we really really want the closed reduction to be successful :)

After Jack's 6 months in a cast he will have some pretty cool braces that he will start wearing 24/7 and eventually be able to move to just wearing at night-time.

We are doing well - I am back in shock after seeing his xrays & I know that Rich is feeling the same. It is just so hard to believe that so many Dr.'s and nurses missed this. Dr. Joughin, I am pleased to tell you, is going to give 'our miracle radiologist' big kisses - we are so greatful he noticed Jack's hips .... so greatful!!

SUNDAY, APRIL 06, 2008 04:45 PM, ADT

It's Sunday night and we are ready for tomorrow morning & whatever it brings. The house is clean, laundry is done, freezer & fridge are full ... but the best part is Jack has been home this week. It was neat to see how excited he was to be home - big 'happyjack' smiles for everyone! He's had a great week & seems to be completely recovered from the RSV & pneumonia, which is what the Dr.'s were hoping for, for tomorrow.  We meet with Jack's Pediatric Orthopedic Surgeon, Dr. Braurer, tomorrow morning at 8:15. When we met her partner, Dr. Joughin, last Monday she let us know that tomorrow's appointment will be to discuss upcoming treatment &/or surgery as well as scheduling.  I was very impressed with Dr. Joughin on Monday. She literally 'hauled' all the Doctor and residents that had seen Jack during his 5 days in the hospital & taught them how to check children's hips 'properly'. I felt sick when she told me Jack's diagnosis & it felt very good to see her share the same emotion. CHD is normally caught within the first few weeks of life & the earlier it is caught the less invasive & lengthy the treatment. It's hard to believe how long Jack has gone. We will update as soon as we have answers and dates tomorrow.

All aboard ....

Welcome to our adventure! 

It is my hope, through our blog, that I am able to keep our loving family and friends updated through jack’s treatment for Developmental Hip Dysplasia (DDH) and help others who may be just starting or are currently treating a child with DDH.

This amazing boy is our “happyjack”.

Developmental dysplasia of the hip (DDH) or Congenital dysplasia of the hip (CDH) describes a variety of conditions in which the hip does not develop properly.

The hip is a 'ball and socket' joint. Normally the top of the thigh bone (femur) has a round ball shape which fits into a cup like socket on the pelvis (acetabulum). There are a range of developmental hip conditions that can affect babies.

In the mildest forms, the socket may fail to grow deep enough. In the more severe forms, the femoral head or ball may be displaced completely out of the socket and be dislocated. 

We know that Jack's left hip has been completely dislocated since birth and that his right hip is in contact but in an 'abnormal' way.

This is our journey .....