Saturday, March 31, 2012

Emergency Surgery.......unexpected!

Well this actually all started a while ago...but I ignored it while moving and it got to a point where it was ridiculous.  Then after I found out I was pregnant again I started to pay more attention to it.  It has been pretty consistent for the past two months but at first it would be once or twice a week...then it would be gone as long as I didn't get stressed or do to much.  Then it started to get to where I was sitting in the rocking chair until 4am crying because I was in so much pain.  I wouldn't be able to walk, breathe, lay down. or be alive.  I would take hot showers and nothing.

Then last week it last 4 days out of 7......4 days of not being able to walk or sleep and I have an 11 month old big baby that wants to be held.  I mentioned it to my nurse who again told me to relax, take hot showers, and Tylenol.  That was last Friday.  Which it had gone away again by then.  But by Sunday I was once again in extreme pain and unable to do anything.  I had less than 24 hours to get better or pretend to be better so I could get Haven up to SLC to meet her Oncologist.  Crying and cringing I made it up to SLC and did the meeting with the doctor and drove back.  We were gone for 15 hours.

By Wednesday I was again in extreme pain and decided enough was enough - I wanted the doctor and not the nurse.  I called to get an appointment for Thursday and it was set.  About an hour later I decided may be I should send a photo to the doctor to see what they say.  I called back and talked to the nurse and told her exactly what was happening and that my belly button is HOT and purple red and I can't touch it.  She put me on hold for about 2 seconds and then told me "Get to Labor and Delivery immediately".  Ummm ok...well I didn't have the car seat for Rohnin and the hubby was downtown.  So I waited for him to get home and we headed to labor and delivery.  First impression:

I was in L&D for about 5 minutes to check the baby...then I was off to the doctor's office....who then looked at me for about 5 minutes with a very worried face.  He leaves and comes back and says "I have you set up to meet a surgeon across town.  You need to go now."  Ummm....ok

So we set out to the surgeon's office and I was in there for about 10 minutes and surgery was scheduled.  My biggest concern of course is the baby...I will deal with pain if surgery is going to hurt my baby boy.  The doctor who reassured me that he has 6 kids and if it was his wife he'd have her in there too.  I made sure Kris was ok with the decision - it's his boy too.  He was the same as me - as long as the baby is safe with anesthesia and stress of surgery then let's do it.  Instantly I got a sheet of paper and was told to head to the main hospital for surgery and the surgeon would see me there after contacting my doctor.

About two hours later I woke up in recovery with a nice big cut across my belly at the belly button.  Once I was awake enough I was transported from the main hospital back to Labor and Delivery to be monitored for the next 24 hours.

Of course where does my baby boy want to be....right under the incision site. The next morning I spoke with the surgeon and the initial spot I came in about (belly button) was "something he doesn't see much".  It was an incarcerated umbilical hernia.  When he opened it up he said he could see the uterus - so there wasn't much protection at that point.  He also checked a bit higher by pulling up the skin and found another hernia a few inches above the main one.  The belly button was about a 1" wide hole of he had to place a mesh barrier in there and sewed that down.  The smaller hernia above that had to have stitches to close. 

Here it is after two days of sleeping.  Being 28 weeks pregnant my biggest issue now is preterm labor due to this.  So I have been put on limited activity for 6 weeks.  I can't lift anything over 5 lbs and no bending.  Doesn't make life easy with Rohnin who always wants to be held.  So far though I'm doing pretty good...daddy and Haven are amazing helpers.

I also have a lot of people to thank...Grandma and Grandpa --- thank you for taking the girls each day and watching them so I can recover.  Taking Rohnin and letting me sleep to heal is the best thing I could ever ask for. 

Thank you to the DV Relief Society for dinner each night.  I can't express how much help dinner is.  I can sleep and not worry that the rest of the family is being fed.  It's amazing and all of you are so great.

Tara - thank you for taking care of Deezy and bringing us dinner as well.....

We aren't sure what we'd do without neighbors and family to help during this time. 

Haven's chemo was also moved to Tuesday next week - since I was in the hospital.  It's a 6 hour visit and I haven't quite figured out if I can sit that long without needing a bed myself. 

Then Friday (of course I get to spend my birthday at the doctor) I will be at the doctor for a follow up and check on the baby.  Then April 11 I will be back in with the surgeon to check the incision site. 

Nothing like keeping the days full....

Again thank you to everyone......for all the food, child care, and well the nurses is L&D said - top priority goal --- STAY PREGNANT!

Wednesday, March 28, 2012

Primary Children's Oncology visit

 Headed to SLC yesterday with the girls for Haven's appointment.  It's about a 600 mile round trip drive!!!

 During the drive Haven decided to take a nap and Rohnin decided to take a few bites in to Haven's orange.

 The view from the parking lot was breathtaking - so beautiful!

 Haven getting her weight and vitals done.

 Blood pressure was great.

 Working with her new nurse Tiffany.  She was showing Haven a new way to numb the port.  They have a cold spray that works instantly.....ultimately Haven decided to go with the cream and not try something new since it was her first time there.

 Prepping to access the port.  Haven was not happy that the needle was different looking but it was the same - 1" needle.

 Hoping the port still works....we flushed

 and flushed!  They have a medicine to unclog the port if needed....but after a few flushes...

 We were in business....what does that mean!?  NO SURGERY!  Yay.....Haven did amazing as usual.  We had lots of blood taken.  Some of the labs we checked were her IGG levels, prolactin, sodium, IGF-1, and CBC.  They of course checked other oncology labs but that's what I can remember. 

Her doctor was great...we really liked her.  She listened to both Haven and I. She had also read up on ROHHAD and knew about Haven.  She had the latest info from Hopkins on Haven that we had sent up to her. 

We did not receive chemo yesterday as we needed to get all of her labs done first.  I am to receive a phone call today with the results and she will have her chemo on Friday this week at Dixie Regional Hospital.  We got a prescription for numbing cream and for more DDAVP. 

 Haven wanted to do a few photos from the campus.  This is front of the Painted Horse.

 Haven the Gnome

 Being the bird

She is just too cute!!!!  She did amazing.....we are very proud of her.  Will update again after chemo on Friday!

Wonderful weekend

 On Friday  I went to the doctor for my 27 week check up and got to drink some yummy sugar water.  This has never bothered me in all my pregnancies.  I know a lot of women can't do it but I can drink it in one big drink.  The problem is you have to wait an hour before they can draw your blood.  So this was a long appointment.

 Miss Rohnin came with me.  Luckily she is very good when in public and she had fun playing with the table.  I was extremely worried that since we'd be there for a minimum of 2 hours she might not be the best baby.  She did very well.

 Miss fashionista wearing my glasses. 

 Then Friday after Haven came home we got a fun package in the mail from Grandma and Grandpa in Virginia. Filled with Easter goodies....Rohnin absolutely loves her lamb.

Haven got some veggietales stuff and we'll be making Easter eggs with it before Easter.

Friday night we decided we would do a party night and make some pizza.  Haven of course will spend at least 30 minutes decorating a pizza while I go nuts.  Each sausage had to be on it's own ham slice.  My side is the messy side!

 We also started working on our chicken coop out back.  Pics to come soon.  Haven has wanted chickens for so long and is excited to feed them and get eggs from them.  We are also looking at adding a goat and building a little "house" for him.  If Haven could she'd do an entire petting zoo with Alpacas and everything back there.  But we'll start with goats and chickens!


Monday, March 26, 2012


I have updated the page link on this blog titled ROHHAD.  You can click on it to read about the symptoms of ROHHAD and other places you can learn about ROHHAD. 

Or click HERE

Primary in SLC

Tomorrow we head to SLC to visit Haven's doctor at Primary Children's in SLC.  We're expecting a 5 hour drive up there , 3 - 4 hours for the appointment is what I have been told by the Oncology department, and then a 5 hour drive back home.  Considering we will most likely have to be up there for a few days for her surgery we will not be spending the night this time.  Plus we have a little doggie that needs us back home.  I have talked to them in Oncology and am still not able to bring Rohnin in with us.  Which makes all of this a lot more stressful - especially since Hopkins never said I couldn't bring Rohnin in.  The only place she couldn't go was isolation rooms.  Which Haven was out of by the time Rohnin was born.

We've been searching and trying to figure out what to do.  We've just never had this problem before and when dealing with new doctors and chemo and surgery we definitely don't need another stresser.  Luckily we have a most helpful neighbor.  Kris and I went over to talk to Tara about possibly helping with Deez on Tuesday and to our relief she said YES! :)

So Deez, who is obviously not used to the rough life, will stay at home and Tara will come over a couple times in the day to check on her and then feed her at dinner.  Thank you so much Tara!

Next our plan with Rohnin is that either Kris or I will stay out with her during the appointment.  Maybe take turns so we can both meet the doctor.  We might possibly be meeting another ROHHAD mom in SLC.  She has offered to help with Rohnin but I'm not sure Rohnin will be able to hang out with someone she doesn't know or has never seen.  So more than likely one of us will stay with her for the 3 - 4 hour appointment.

Never the less, this will be a very very long day!  Almost too long to think about.  We are hoping we can get all Haven's treatments moved down to St. George although it didn't sound like it when I spoke to SLC.  I just can't see doing this every 6 weeks.

Once we recover from the trip I will update as to what is going on and what our next steps are.

Wednesday, March 21, 2012

ROHHAD and our battle!

Well we are introducing lots of new doctors to ROHHAD lately.  We do seriously hope that by 2013 Haven's ROHHAD treatments will end and she will just be monitored.  It's been 5 years now!!!  But honestly, we still to this day couldn't be happier that we stuck with the treatments and pushed through the pain.  Haven is so different than she ever was before treatments began.

So next Tuesday we will be spending our day in SLC.  She will be meeting with an Oncologist there to review her current dosage of IVIG and see what they think.  They are in contact with her other doctors and I know there are two other ROHHAD families that go there.  We may even be meeting up with them while we are there.

I scheduled our appointment at 1:30 in the afternoon since it's a 5 hour drive there and a 5 hour drive back.  Rules are that siblings under 18 years old can't be on the Oncology floor.  So I'm not sure what they are expecting me to do with an 11 month old baby.  We'll deal with that when we get there I guess. 

I'm not sure what to expect on Tuesday but I have Haven's latest files - Haven's pediatrician faxed them up to SLC so I know the doctors have already had a chance to review it all. 

I had to reschedule Haven's appointment to check her asthma to April 10th since we will be in SLC when she was supposed to go. 

We will update when we get more info! :)

Jessie.....she's a superstar!!!

I am a bit late on posting this but I have to say this little girl brings happy tears to my eyes!  Her mom friended me on Facebook in 2007 when Haven was first diagnosed.  We have been friends and stayed in contact ever since.  I'm constantly checking in on her daughter and she is constantly checking in on Haven. 

Jessie just had an MRI on March 13th and we're awaiting results.  These kids are more amazing than anything I could dream of.  Jessie is truly an inspiration and I'm so happy to know them!  We love you Jessie and Stana!

You can check out Jessie at Caring Bridge or her Families Against Neuroblastoma (FAN) page!

Sunday, March 18, 2012

Thank You To Our Neighbor!!!!

We can't thank you enough for the help on our jungle in the back - what is now a beautiful back yard....we just keep staring at it!

Check out the before and after shot:

It's amazing what a lot of help from new friends can do!!!!  These photos are taken at the same spot to our house....of course without our trees in bloom...but that's happening very fast!!!

Here are a few more photos of the beautiful back yard!


Workin it!!!

 Can't believe the yard is this BIG!!!

 Look at Deez....she doesn't even know what to do!

 what's over here?

 and over here?

 Can you even see me back here?

The furthest out I've ever seen was an absolutely crazy day!

Thank you Mike for all your help.....we really appreciate it and now we don't have to worry about fires or snakes!!!! 

Eye Candy

I've been out doing eye candy shopping all the time....yesterday I found a new place of beautiful homes.  I just look at the homes here and I am in love.  I am a desert home lover and just having a house with siding or brick just doesn't  have the same love that these do.  Throw in some palm trees and bam......

The front yard of this is just what I would dream of!

 Front door entrance....amazing!!!

 Kayenta....oh how we love thee!  Ultimately the house I would love to retire in is a house in Kayenta.

 Another Kayenta house.

 Amazing house....6 beds/5 baths and only $369!!!

 Oh the beauty of Kayenta

 Another amazing Kayenta...with amazing views.

 Well....this one is way out of if!  It's selling at 7 million dollars!  Two movie theater rooms and the pool is ridiculous!

 But this one.....AHMAZING!

 Not for sale but I really love it

 For sale -- 4 beds/3 baths .... oh and it's listed at a whopping $229!!!


Not for sale but beautiful.......

I have so much fun just going around neighborhoods and checking out the beautiful homes.  South Utah is full of them everywhere!!