June Summer Fun

We are already half way done Summer! I don't like this. Expecially because I feel a very real countdown to September. Sean goes into Kindergarten. I'm so very excited for him and also don't want the day to come. I'm sure many of you know what I'm feeling.

In-spite of all that we are having fun with a very busy summer! Lets recap a bit shall we?

June we went on our first camping trip. We took just one day and ran out to Park Lake just to work out the kinks of having a new trailer. The boys loved it and rode their bike EVERYWHERE. Paige even started sleeping longer stretches at night. Hurray camping!

Then later in June we took the trailer on a longer trip down to Rexburg! We stopped in Great Falls briefly to meet up with Dani and Chase at The Golden Corral and grab some groceries at Walmart and then we went to Helena where we stopped in the Walmart parking lot for the night. A street sweeper woke us up super early. But luckily the kids slept through it. Then we started driving and made it to Rexburg. (With a quick stop in Lima for lunch and WIFI)

We set up and let the boys play in Rigby lake for a bit and then started a fire for a weiner roast! Some long time friends from when I was little and lived in Idaho came and stopped by for a visit. It was fun.
The next morning was super rainy but we met up with Dan's family at their Air BnB rental and borrowed their Bear World passes. Before we did that I ran to see my friend Jenny who I haven't seen in WAY to long! And I got to meet her baby boy! Sadly she didn't get to meet my kids or anything. Next time?
Then we ran to Pizza Pie Cafe. The boys loved it. But really who doesn't love unlimited pizza pasta and Salad???

After that we took those passes and went and visited Bear World. The Boys loved it!

After the Bear World fun we ran and got cleaned up and headed to Dan's Cousins Wedding Reception. That was fun as well. The kids ran like hooligans.
The next morning we packed the trailer up and headed to the Temple for the Wedding. I hung with Gerald and my kids while Everyone else was in for the wedding. It was a beautiful day!

After a quick family dinner and more playing with cousins and family we loaded up and hit the road again. We stopped in Holter Lake and met up with Dani and Chase again. We spent two nights there with them. Such a party. It was a rainy few days their with them but that didn't slow the kids down. They just threw rocks into the water all day. All Day.

 Uncle Chase taught them some baseball.

 Caught a crawdad and cooked it and the boys all tried it.

One Saturday in June Dan also bought a little 50cc Dirtbike.

The boys are in heaven and love it!

Sean can even ride it himself. We're trying to convince Max that he can do it too. Strange kiddo. 

Our Stake had a sports day we took the kiddos to. The rain held off just long enough for everyone to have a good time.

 Evan was terrified for a while in the bounce house obstacle course. Then I went through with him and just told him to punch his way through. He enjoyed that and I could hear him saying punch punch all the way through.

Sean and Max just ran free so I apparently have no pictures of them.

Sean had Kindergarten Orientation. He loved it and didn't want to leave when the time was up. He is so looking forward to starting school.

June was so busy and so fun! On days we weren't running wild we met up with friends at splash parks and Parks. Its been a good start of summer!

At the end of June we went on our annual Friend Camp out to Belly River! It rained the whole time but we all still managed to stay dry and have fun!

Paige was dealing with a Yeast infection at the time so she was kinda miserable/just wanted to sleep. But she still enjoyed herself as well!

Ran into our Friends the Vidalls in Waterton

See we got some smiles

Annual Dad Bod Dip

Sexy beast of a man!

Cute little Bums!

It was so much fun. Looking forward to it again next year.

The Boys!

I feel lately that all I've talked about and had stories about is Paige. Which makes sense because she is a baby and a high needs baby at that. Our life does revolve around her a lot right now!

The boys have been great though! So wonderful with spending lots of time at Grandma and Grandpa Parkers house. Having others watch them and being dragged all around. They have done so well and still love their little sister so much!

They pray for her every night which melts my heart!

After bringing her home from this latest surgery Sean asked me if all the fluid was out now. When I told him that the shunt was working and doing its job and she didn't have to much fluid anymore His face just lit up! He said oh mom that's so good!

These boys are full of Love for their little sister! They almost smother her sometimes! Just today I had to stop them because they were head butting each other; fighting over who could look into her eyes. what knuckle heads!

Sean! He's going to be 5 tomorrow! I can't believe it. Has it only been five years since I held my first little baby in my arms?
He is still very cuddly. First thing in the morning comes and snuggles up to me or Dan. He's very sensitive and kind.
He learned how to ride a two wheeler just a week ago! He told me "Dad is going to be so proud of me!" And Dad was very proud of him!
He's loving soccer and doing so good! I think it's helping him that I'm not coaching him this year!
Sean is very into helping me and seeing what I'm cooking or baking. So I try to include him. But oh my OCD side struggles a bit.

MAX! What a wild child. He's the reason I go to bed so exhausted every night! He is a fierce and stubborn one. But also so sweet and cuddly! Especially if he is sitting next to Dan while we watch a show. He's probably the most "daddy's" child of all the kids.
He was regressing in potty training after we brought Paige home from the hospital and even more so after we came home from her first surgery. So we bribed him with a sticker chart and once he got all his stickers he would get to go to a show with Dad! They just went to Sherlock Gnomes the other day and max loved it!
I don't remember who taught him this but if you point to his face and say Hey Max whats that? He'll respond with This is my money maker! And he has the best puppy eyes ever!
He's favorite sayings ever are Why Mom? and What did you say?
Max is also playing soccer! And for being the youngest on his team he is doing remarkably well. Dan and I both think he's going to be our natural athlete.

Evan! He is also one stubborn little boy! He's in the hard stage where he can almost talk fluently with us but still struggles sometimes to get words out and such. So that's when he gets really frustrated with himself and us. He is still the sweetest! Oh I love his snuggles and hugs! He also is super polite. Please and Thank You for Days! He tries to be one of the big boys and do EVERYTHING his brothers are doing. They love him and let him tag along pretty well!

I love them and I am so grateful I was blessed with these three rambunctious boys who drive me to my breaking point and then doing something sweet that makes me almost forget their misdeeds!

Paige's Shunt Surgery

We didn’t think it would come to this surgery. We both felt pretty confident and inspired to do the ETV/CPC.
I had started to notice about 2 weeks after our ETV surgery that Paige’s soft spots seemed to be fuller. I was a little bit worried and stressed. I gave it a few days and did my best to keep her even more upright and prayed and prayed and prayed. After that few days spell it seemed to be softer so I calmed down a bit. Then I measured her head... it has grown about 2 cm since surgery. They told us after the ETV surgery that her head shouldnt grow much. More plateau then anything. So I figured the 2 cm should be okay.

Then at about 3 weeks post op I measure again and that head circumference has jumped up again on me. And it was at 50cm. The top number that they ever wanted her to hit. Around all this My Mom had notice her bump at the back of her head doing something weird too. It looked like it was a big bruising and that it was growing and spreading. So I called them. And chatted with them about what was happening and how Paige was doing. They decided to bring us up on May 3.

Paige and I went to the appointment. The neurosurgery clinic at the Children’s Hospital is amazing. I feel like they actually know who we are and who Paige is and what’s going on with her. It’s wonderful. So we met with them and did a fasthead(a very quick MRI) and came back to chat with them and talk with the neurosurgeon.

He came in and felt Paige’s head and saw her head measurement numbers and said that we needed to put a shunt in. He didn’t like the growth of her head. And the soft spot was still soft but not quite where he wanted it to be this soon after her ETV.
It wasn’t unexpected but still felt like it came outta left field. He said he would try to get some OR time in the following few days.

Then he took a look at the colouring around her bump and said it looked like hema something (like a stork bite that some babies get). He wasn’t too concerned and said he would poke around it during shunt surgery. Which was nice because she HATES it being touched.

We got a surgery date for May 9 but they wanted to see us on May 8 for pre op stuff and to make sure her head didn’t change drastically in the few days we had between our appointment and surgery. I hoped and prayed it would but deep down I knew a shunt is what was needed now.

Our surgeon gave me 3 options for surgery.
Anterior(top of the head) where her other incision was.
Posterior(back of the head) behind the ear
And to take place in a study to determine if there is a better placement for the shunts. So a computer takes all the kids information and then the computer determines where the shunt should be placed.

Talk about decisions. They said I had until right up to the surgery to decide.

Instantly I thought about the fact that once you get a shunt you typically have one for life. Shunts are guaranteed to work but they are also guaranteed to fail and need revisions throughout them growing up. So I thought about this little girl of mine and where having a shunt might be easier on her. 
The back of her head behind her ear came to mind. When they have to shave some hair off it would be easier to hide when she’s a teenager. The downside is sometimes kids hate laying on them and so that’s a bit rough. Dan and I talked about it and it seemed like a good idea.

May 8 came and we went for our pre op check up and talked with them some more about the shunt and what to expect and such. While I was chatting with them I kept feeling like the shunt needed to be in the top of her head. But I didn’t want it there.

I called Dan who wasn’t much help in helping me decide. I blame work. He is so busy in the spring and stressed with work add to that he couldn’t be there for surgery.

I called my mom and told her what was going on. And about shunts and where to place them. She could sense my doubt and frustration. I felt like I had already failed because I thought I had followed a prompting for Paige to get the ETV and it failed. So I was hesitant to make another big decision for my baby. Mom told me to stop thinking like that. I hadn’t made a wrong decision. She said she was praying for me and that I would know where this shunt needed to be.

I knew I didn’t want some computer deciding. That much I knew. Cosmetically I wanted it on the back of her head. It saved her another entrance point too. They only have to make an incision behind the ear and by her belly. The top shunt they have to add an incision behind the ear.

So many choices.

Paige and I stayed with Glenn and Cassandra that night and Cassandra and I snuck off to a movie. (I Feel Pretty. So good!) It was pretty great. Paige slept through most of it.

Got back and put Paige to sleep and then visited for a long while. It was great.

We had some time to hang out in the morning before we headed back to the hospital. Paige had to stop eating at 9:00 and we had to be at the children’s at 11:30. Luckily my mom and Skyler were up in Calgary for an appointment Skyler had so they were going to meet me at the children’s when they were done.

By the time we got there and checked in I felt peaceful that the shunt needed to be up top. It can never go how I want....

Dr Riva Cambrin came in quick before hand to chat with me and see if I made a decision. I told him the top through her other incision. He was good with that. So away he went to prepare.

Mom and Sky showed up and we visited and passed the time. Because waiting takes FOREVER! Finally just before 2:00 it was her turn to go back.

I don’t know how but she wasn’t screaming her face off for food. She had slept on me for a good long time and then sucking on her soother helped too. (Try and get her to take a smoother at home though. Impossible)

Mom and Sky went to the waiting room and I went to the holding room just outside the OR. Met with all the doctors and nurses who would be with her. Even chatted with a lady waiting for her grandson. Which was nice. She was so very kind. She hovered in the back ground to give me space when talking with the doctors but stayed close. I heard her say to her daughter that she thought I was alone so she just wanted to make sure I was okay. So kind. She looked relieved when I said I had my mom in the waiting room.

Doctors and nurses took Paige back and said it could be as short as and hour and a half or as long as two and a half. So I mentally prepared my self for the longer time. Because longer doesn’t mean bad. It’s a good sign of them taking their time. Which is what you want on the head right. And then I could be pleasantly surprised if they finished sooner.

Once they took Paige back to the OR I left for the waiting room. Sat there with mom and Sky and then started talking with the mom and daughter from the OR. As I was chatting with them the doors opened and I glanced briefly even though I knew Paige wasn’t done yet. But it was definitely her surgeon coming through the doors.

My heart dropped in to my stomach. I’m pretty sure he could see the terror in my face. He said no no. She’s fine. We haven’t even started yet. And then he told me about a rash he found on her neck. Where it was then shunt would have to pass under and he was a hesitant to place the shunt in her old incision. The rash could be nothing. But it also could be fungal which could infect the shunt and give us problems. But it could be nothing. So he was asking my permission to go in on the other side on the top. I gave my permission and off he went.

Everytime Paige has gone through surgery so far and even when I went in for my c section I prayed for the doctors hands. For their minds to be open to inspiration and just to be mindful. Him finding that rash and being cautious about it was just another blessing being answered.


Mom Sky and I waited and waited and waited. The worst part. Waiting. I feel I’m always waiting. I should be pro by now.

Very close to the 2 1/2 hour mark Dr Cambrin came back and said all went well. It was nice and smooth. Ran me through some of the after care and what was to expect with the shunt and how it drains and works.

Read up on shunts and you’ll learn there are many many types. They can get pretty fancy with some having magnetic dials to adjust the flow. He said oh no oh no. I put the simplest one in. Less things to adjust. Less things to fail. He said it was the shunt he would want if he ever needed one. The simple plain Jane of shunts. Awesome.

He left and then we all waited and waited some more. Typically it’s been maybe 10 mins after the surgeon comes in and then a nurse comes in and grabs a parent to be with their kid while they wake up. But they never came. So about an hour after he left I went to the desk to see if they could check on my kid. They said if they hadn’t called me she was still sleeping but she said she’d call them and double check. Found out they had just left for the PICU.

So we went down to the PICU where I had to wait some more because that’s a locked down unit and I didn’t have Paige’s code to get in. Gah. Luckily I got in about 10 mins after getting down.

Saw my Paige and she was sleeping. I stroked her fingers and talked to her and she grabbed my hand. She was awake enough to know I was there. So I sat with her for a bit then ran out and ate some food Mom and Sky got and then brought them back in to see her.

She was just really sleepy. Which is fine. Mom and Sky left around 7:30. It was nice having them there because Mom and Sky can remember things that the surgeon said that I forgot or things the nurses said. Haha. Glad I had them.

I stayed in the hospital room with Paige. Around 9:30 she was starting to be fussy but was still really sleepy. I knew she sees getting hungry but wasn’t quite awake enough for food. Around 11:00 she finally ate even though it wasn’t a lot. It was a long night but no scary stuff. She just slept and occasionally cried out every 15 mins.

Morning we hung out and Phoenix came to visit. Her and I went to visit and then she was able to come back and see Paige and get a nap herself.

 

We were just hanging out in the morning waiting for an MRI and a shunt series. 

She had the MRI around 11:30 and the shunt series around 1:30. Shunt series is just a set of X-rays so the can see the entire shunt from her head to her belly and make sure everything is aligned properly.

Doctors finally gave us the go ahead to leave and we were out of there by 3:00!

As sad as I am that our first surgery didn’t work I’m glad there was another option that will help my little girl out and give her a good quality of life. 

home snuggling Dad.

Paige's Surgery

The goal at birth was to try and make it as long as we could without surgery. When I was pregnant with her I always assumed she’d be coming out and then a day or two later she would have surgery. It wasn’t until we met with her neurosurgeon just before we had her that we learned it could be an option to go home with her before surgery. What a blessing.

Paige’s neurosurgeon was pretty confident we could make it a month before surgery. If we could make it at least that month Paige would be a candidate for another surgery that would prevent a shunt. That was the goal. Really if she needed surgery earlier though we would have done it.

one month old

Paige made it a month. An exact month. April 5 she had a check up with her neurosurgeon up at the Children’s Hospital. Up there it was decided that it was surgery time. Sooner rather than later. They hunted around for OR time and got a slot for April 10. It was a relief knowing we had a surgery date. And hearing that she was a great candidate for the ETV/CPC surgery. (No shunt)

She got the same pre op bed that Max had!

Endoscopic Third Ventriculostomy/Choroid Plexus Cauterization (ETV/CPC)
This procedure is where they go into the third ventricle of the brain and poke a hole in the floor of it. This allows fluid to start flowing out of the brain and down the spinal colum and absorbed into the body. (Very similar to what a brain/body typically does). Then they go to the choroid plexus (this is where the cerebral spinal fluid is produced) and they cauterize them to reduce the amount of spinal fluid that is produced.
So in the end it allows the body to circulate the fluid “naturally” and not produce as much fluid so the brain and body can keep up.


 Up front we had a lot more “risks” associated with surgery but in the future risks are minimal and there won’t need to be repeated surgeries. Where as a shunt is very minimal up front but in the future you are guaranteed revisions and replacements and risk of infection is higher.

ETV/CPC is Still newer and not everyone is a candidate for this surgery because of arteries and tissues and placement of your brain tissues and such. There are only 5 doctors in North America that do this surgery and we are lucky enough that our surgeon just happens to be one of them. (BLESSING)

Paige’s surgery lasted just over 3 hours. Everything went really well and her surgeon was able to do everything he needed. (BLESSING). He was quite pleased.

Recovery in the hospital was good. Her first night was the worst. When we first saw her she was awake but still very much zoned out. She knew we were there but you could tell the cloud of drugs was still in her system. When we got to the PICU she was still doing great. Around 9:00 that night (we saw her and she was out or surgery around 6:30pm) she started setting off monitors and bells and whistles. It’s quite unsettling to see a nurse come in and start poking and rubbing your baby vigorously. Her heart rate kept dropping and after the rubbing and prodding it would jump up. But then a couple minutes later it was dropping. It was happening enough the nurse wasn’t leaving the room anymore and was calling another nurse to go get the doctor.

Talk about a panic attack. Doctor came in and was a bit concerned as well. She figured it could be 1. Paige working off the anesthetic or 2. A brain bleed

So they ordered a CT scan pronto. Yes I started to get all shakey and scared and worried. Up till this moment I was very calm and filled with Peace. I knew all was going to be fine and okay. But in this moment I let my guard down and started thinking the worst. It was the horrible dark sinking feeling. They took Paige off for her scan. I sat with Dan for a bit scared and misty eyed and worried beyond belief. I got up and went to the bathroom and walking in their and turning on the light I knew what I needed to do. I prayed and prayed and slowly that peace and that comfort I had all day long came back. She was going to be fine. (BLESSING)

She came back about 15 minutes after they took her and said we would know the results in a few minutes. Guess what? It was fine. No brain bleed. Just the anesthesia working it’s way out of her tiny system. The trip to the CT scan she was screaming at them. And she came back angry. (BLESSING)


The nurse was happy about all that anger because after those fits she was throwing all the monitor readings were in the acceptable range again. (BLESSING)

LOOK at those eyes!!! so alert and awake!

Dan was able to leave around 10:30 to head home to the boys and work and Paige and I hung out. She was still a bit fussy throughout the night but no where near scary. She calmed considerably more when they started feeding her. But she was stubborn and we had to re introduce it slowly. She was so hungry she’d stop breathing and just inhale her food setting off monitors and making the nurse and I hold our own breaths. But she got the hang of it again in no time and we got to check out of the hospital on Thursday. (She had surgery Tuesday) we stayed at Tony and Sassa’s again till Saturday. (BLESSING) Our doctor wanted us to stay close for a ew extra days just in case we needed them. I was happy to take some time to just chill and relax.

gah! shes so pretty! attempting holding up her head!

Guzzling some milk!

ZONKED!

We came home Saturday and she has been doing great. She has been more alert and seems to hear and see better than before surgery.

I love this little girl and all the blessings and miracles that are coming our way. I have never felt so blessed and loved. This little girl is going to do great things.