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

XO,

Steph

We now have a time ..

I'm never sure if I should feel blessed or sad that they know Jackjack by name okay, yes, and sight .... although with his crazy head of red he can be hard to forget! They are looking forward to seeing us "no later than" 6:30 am. Jackjack will be first case again as his surgery is scheduled to start at 7:40. We have no idea how long it will be as it is partially dependent on his reaction to the anaesthetic and whether or not he has bone growth over the head of the pins.

I'll try & keep my tweets as up to date as I can from my phone & will be able to post a more detailed "How's Jackjack" as soon as he's in a room. Hoping this will be his last surgery for a very, very long time.

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.