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!
Monday, 14 May 2018
Saturday, 12 May 2018
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.
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.
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. |
Friday, 4 May 2018
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 |
| 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.
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! |
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.
Saturday, 24 March 2018
HOME
What an adventure Paige's first two weeks of life have been!
Paige got transferred to the Alberta Children's Hospital on March 9 after her MRI at the Foothill's Hospital.
I was able to escape the Foothills myself on March 10. I arrived at the Children's in perfect time to try and nurse her again. I think she just got a whiff of me and knew that I was exactly what she wanted. She took to me no problem. After feeding her we did some skin to skin and the Nurse commented that she hadn't seen Paige that relaxed since she had gotten there. Not that she had been doing bad but I just relaxed her that much more.
I pretty much just spent the whole day holding her and letting Dan pass me my pain meds. That was that day.
Over the course of the days we were there they did a few tests with her. They did an echo on her because they thought there was a hear murmur but it turned out to be nothing.
Ultrasound on her abdomen to check out her internal organs. Everything was normal and good.
They did a hearing test which her right ear failed the first time and then the second time they did the test right before we got home she passed. Yippee!
Eye test. We're not entirely sure whats going on there as she is so young. But the Opthamologist said Paige's Optic nerve is more on the white end and they are normally pink. So she could have eye issues when she grows older or she could be fine. (story of our life right now) Really we won't know till she starts crawling/walking and if shes clumsy.
EEG- passed it. No seizure activity as of yet. Lets hope it stays that way.
This test they did while we were gone eating lunch. When we came back up her head was all wrapped up and there were wires and a camera on her and everything. It was quite scary until the nurse reassured me she was fine and this was just the EEG.
The NICU surprised us and let us go On March 14. We didn't tell family. We just surprised them by showing up at home! Needless to say I think everyone was quite pleased.
She's home and were doing great! We just have to keep measuring her head and calling in the measurements once a week so we can continue monitoring her head growth. At some point she will need a surgery to help with the excess fluid. But right now she is managing just fine on her own.
Her mengecele is also doing just fine. Thats that little bump you see right there. The Doc's figure it'll either drain on its own when she has a shunt and if it doesn't then they'll get plastic surgeons involved and they will fix it up when shes a bit older.
We had to run up to Calgary on the 22 because in the week we'd been home from the NICU her head had grown 2.5cm (TOO MUCH!) But the surgeon was okay with it because she was still acting like a typical newborn, eating, sleeping, no vomitting or irritability and her fontenells were still soft like. He said we had just "tripped" a warning wire but we still are good.
So we see a pediatrician down here on Tuesday and go back to Calgary April 5 for another meet with the surgeon. We're getting very familiar with the highway to Calgary.
The boys are absolutely in love with her! They always wanna hold her or see her or be near her! They are also very gentle with her. It warms my heart that she is so protected by her brothers!
Sean tells me to watch her as he runs out of the room. It's very sweet. Evan calls her his "tiny one" or "pincess paige" its so sweet.
The first thing Max did when he met her was grab her pink finger and skadoosh her. But he also loves holding her and kissing her.
Paige got transferred to the Alberta Children's Hospital on March 9 after her MRI at the Foothill's Hospital.
I was able to escape the Foothills myself on March 10. I arrived at the Children's in perfect time to try and nurse her again. I think she just got a whiff of me and knew that I was exactly what she wanted. She took to me no problem. After feeding her we did some skin to skin and the Nurse commented that she hadn't seen Paige that relaxed since she had gotten there. Not that she had been doing bad but I just relaxed her that much more.
I pretty much just spent the whole day holding her and letting Dan pass me my pain meds. That was that day.
Over the course of the days we were there they did a few tests with her. They did an echo on her because they thought there was a hear murmur but it turned out to be nothing.
Ultrasound on her abdomen to check out her internal organs. Everything was normal and good.
They did a hearing test which her right ear failed the first time and then the second time they did the test right before we got home she passed. Yippee!
Eye test. We're not entirely sure whats going on there as she is so young. But the Opthamologist said Paige's Optic nerve is more on the white end and they are normally pink. So she could have eye issues when she grows older or she could be fine. (story of our life right now) Really we won't know till she starts crawling/walking and if shes clumsy.
EEG- passed it. No seizure activity as of yet. Lets hope it stays that way.
This test they did while we were gone eating lunch. When we came back up her head was all wrapped up and there were wires and a camera on her and everything. It was quite scary until the nurse reassured me she was fine and this was just the EEG.
The NICU surprised us and let us go On March 14. We didn't tell family. We just surprised them by showing up at home! Needless to say I think everyone was quite pleased.
| giving her her first bath before we went home. She loved it. |
| Going home outfit she crapped out of. of course. |
She's home and were doing great! We just have to keep measuring her head and calling in the measurements once a week so we can continue monitoring her head growth. At some point she will need a surgery to help with the excess fluid. But right now she is managing just fine on her own.
Her mengecele is also doing just fine. Thats that little bump you see right there. The Doc's figure it'll either drain on its own when she has a shunt and if it doesn't then they'll get plastic surgeons involved and they will fix it up when shes a bit older.
We had to run up to Calgary on the 22 because in the week we'd been home from the NICU her head had grown 2.5cm (TOO MUCH!) But the surgeon was okay with it because she was still acting like a typical newborn, eating, sleeping, no vomitting or irritability and her fontenells were still soft like. He said we had just "tripped" a warning wire but we still are good.
So we see a pediatrician down here on Tuesday and go back to Calgary April 5 for another meet with the surgeon. We're getting very familiar with the highway to Calgary.
The boys are absolutely in love with her! They always wanna hold her or see her or be near her! They are also very gentle with her. It warms my heart that she is so protected by her brothers!
Sean tells me to watch her as he runs out of the room. It's very sweet. Evan calls her his "tiny one" or "pincess paige" its so sweet.
The first thing Max did when he met her was grab her pink finger and skadoosh her. But he also loves holding her and kissing her.
| My herd. I love them |
Paige Indie Fyfe
I feel very grateful that we were able to make it to 36 weeks with Paige. Especially after the huge head growth she did and the worry she might come at 34 weeks. But after that huge head growth she slowed right down and remained stable. The rest of her body grew but head remained stable.
So we got to pick a day for her birth and March 8 it was. Didn’t realize when we picked the day that it fell on international women’s day. I just keep thinking it’s a great day for my little lady to be born. She’s so special and already a determined strong girl. I can’t wait to see how she grows.
March 8 came quickly. We had to get to the foothills at 11:00 for the Pretesting and potential blood work.
Let me tell you though that finding parking at the foothills is no small task. We got to the foothills at 10:30 and didn’t find a parking spot until 11:00. Then we had to actually find where we were suppose to be. Foothills is insane. So many branches and buildings and elevators. I still don’t know how we managed to find labor and delivery but we did, at 11:30. Luckily they were cool with us being late. Must happen frequently.
Got in to triage and they hooked me up to monitors to listen to Paige. She started having a party in there. The nurse said,” I like this girl already”.
We hung out there and my OB came in to meet us and walk us through what was going to happen. Up until this point I actually didn’t even know who was going to be opening me up and delivering my baby. So I was very glad to see before hand. I liked her to. Which was good. Found out later that most nurses there think she is the best. And I got a few compliments at how well I was stitched. So that’s good.
Met with the anesthesiologist about what he was going to poke inside me. He was surprised when I told him I’d never had a spinal or epidural with any of my other kids. He walked me through what was going to happen and risks and such. Said some women’s blood pressure will drop, feel nausea and dizzy. He said just let me know how you feel. Because he had meds for everything and was there to help me.
Then we got to wait around a bit more. We almost got bumped. A woman a curtain away was having complications so we had to wait while the on call OB checked her out. But then they took us back.
I didn’t really know what to expect for an OR room. This was my first time with any surgery.
I walked in and had to sit on the table. The anesthesiologist was behind me and getting ready. Had to sterilize my back and then start the freezing. Really weird feeling needles going into your spine!!! Hurt a bit but not that bad. I was hunched over holding a pillow and a nurse was holding my shoulders. Dan was out waiting in a little corner. Once the spinal went in there was this strange feeling. My butt got all warm and tickley. They quickly helped me lay down on my back. It was so strange slowly loosing feeling from my chest down.
After maybe 2-3 mins I told him I felt weird. He has to pry a better description out of me. So I told him my shoulders and neck felt tickley. I had to squeeze his fingers and I could do he knew the numbing wasn’t going too high. So then he checked my BP and yup. It had dropped. Never had that issue before. I started feeling yucky and tired but then started to feel normal and good again. He checked my BP and it had come back up. Super fast fix.
| lack of sleep face and super nervous. |
Dan came in at sat up by my head after. They pulled up the screen and it was kinda tent like for a while.
All the nurses and doctors were talking away and I thought I heard someone say let’s get started. Didn’t really pay attention but shortly after that I felt lots of movement and pressure but no pain. It was then I realized my guts were open and exposed. I started shaking just nerves and such. I looked over at Dan and he looked just about green. He asked me if I was alright I said yes. I asked him and he said no. The anesthesiologist looked at dan and asked him too and dan just shook his head. So he flagged down a nurse who helped dan stand up and walk out.
I wanted to laugh but felt like I couldn’t/shouldn’t because I was pretty positive somebodies hands were in me or they had a scalpel or something.
The nurse care back to me and asked how I was. I was still fine. She said Dan wasn’t going to come back also something I was fine with. She walked back to check on Dan.
Dan walked out of the OR into the little alcove where they had a window with Ned students watching my c section. I told them it was cool. Learn away.
The nurses had dan sit down and try to put his head between his legs. Which, lemme tell you, that man is NOT flexible. He did his best and a nurse gave him a cold cloth and some juice and he felt better. Pretty much just in time to turn around and watch Paige enter the world.
A couple minutes after the nurse left my side to go back to Dan the anesthesiologist said your going to feel a lot of pressure. I did as someone pushed right under my chest a couple of times. Then all I felt was this release of pressure and heard the most beautiful scream in the world. (2:37pm)
While pregnant and going to all the several doctor appointments we had, the news we would get would be a roller coaster. Some days we got good news and felt like there was nothing to worry about. Other days it was miserable news and people didn’t think there would be a good outcome. Through it all we prayed. I prayed. Sure I prayed for a miracle and for the doctors to be wrong and this to all be a mistake. But then I had the thought and felt right about asking that when she is born just let her scream. Let her tell the doctors that she is okay.
So that scream brought tears to my eyes and peace to my soul. I knew everything was going to be okay. We still have a long road of unknowns ahead but overall I know we will all be okay. We will make it through this.
They brought her out screaming and showed her to me and turned her over to the window where Dan was standing and had her wave to Dan. Then they took her over to the NICU team in the corner where they assessed her and Dan came back out and started taking pictures.
Dan came back over to me and asked me if I saw all her hair! Somehow in my joy of looking at her and being so relieved to hear her scream I missed the head full of hair. Nice thick (curly?) locks of dark hair.
Once NICU was convinced she was okay they wrapped her up and brought her over to me. Dan held her up by my face for a minute or two and then they helped dan place her in my arms.
They wrapped her head right away because of the protrusion on her head which they decided was actually an encephalocele and not a cyst. It was all soft and spongy and I guess a cyst would be a bit more firm and rigid.
So even though she was all bundled when I saw her I still could see that sweet innocent face. Man was it ever cute.
I only got her for maybe 5 mins before they took her back and left for the NICU. Dan went with and I laid there getting pieced back together and thanking God for my miracle.
Once I was out back together they moved me to a stretcher and took me to a recovery room. Where I had to wait to get some feeling back. The first thing I did though was ask my nurse if I could have water. I was so thirsty. So so thirsty. Luckily they gave it to me right away. I tried to take my time sipping it but it was just so wonderful. Luckily she got me another. And it was one of the first things dan commented on when he came back and found me.
After just over an hour or so in recovery they decided I was doing well and they would wheel me down to the NICU to see my baby girl again. I didn’t get to hold her. Can’t really remember why. But I gotta touch her tiny fingers and see just how perfect she was.
Her head was amazing to me. I’d been preparing myself for a bigger funky sized head. And while hers is big it’s still relatively shaped normal. Mind blown. She is so beautiful and reminds me the most of Max as a baby. I see glimpses of the other boys in her too but mostly max.
After about 20 mins in the NICU I went to my room and got settled in. Didn’t get any food though which was ridiculous as I was starving!!! They gave me some crackers and juice which helped. Made me realize I wasn’t as hungry as I thought either.
I still couldn’t really feel anything either. Though I could move my legs. Strange sensation. I had massagers in my legs to help keep the blood flowing!!!
Around 9:00 I was able to move myself more so I got to go back down to the nicu. Gotta actually hold Paige for the first time and breastfeed her. She took it like a champ. Topped her up in a bottle though just because my milk hadn’t come in yet.
We also found out at this point that they wanted to transfer Paige down the road to the children’s hospital. And they wanted to do a MRI in the morning.
So I spent most that night being transported down to the nicu to feed her and cuddle her. It was great.
The foothills staff wanted to switch up times of her feeds because her MRI was at 9:00 and how she was eating odds are her next feed would land at 9:00.
It didn’t go as planned and there was some mix up and she got over fed. And so was Pukey and gagging and so that concerned them. Anyway at some point when I was gone for an hour they put a feeding tube in her nose to feed her this over feeding her some more and making her tummy upset and angry. (She didn’t like formula)
They ended up pulling the feed out of her so she wouldn’t puke in the MRI. and gave her an IV so they could still get some nutrients in her.
She went down to her MRI and then went straight to the Children’s. Dan followed her and took care of her there. Met with doctors planning tests and all that. I sat at the foothills taking it easy so I would be able to bust out Saturday morning.
Bust out I did. So glad everything went according to plan with that. We came straight to the children’s just in time for me to feed her. And boy did she chomp down and start sucking. Ever since then she prefers me!!! Haha though I pump enough off too that we leave her here at the nicu at night and go sleep at Tony’s.
It is helping me to recover and get some sleep before she’ll be home and I won’t sleep at night.
Can’t wait for the day we’re home! If she keeps staying strong and healthy it should be soon!
Love my little fighter!
| First picture Dan sent me that I really got to see her Hair!!! |
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