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.

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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.

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!!!

A Time of Growth

I've been waiting and wondering when and how I would post this. It's not something easy to write about or even really think and dwell on. The passed few months have been hard and trying and we still have a few more months maybe even years in this. It's been overwhelming but we have also received many blessings already and I know the Lord has more in store for us.

It all started November 15, 2017 when Dan and I went into the 20 week ultrasound to find out the gender of Baby Fyfe #4. Everything went all routine and normal and we found out we were adding a little girl to the mix. I knew the boys would be so excited. They were rooting for a sister the whole time. The tech ran out to send the results to the doctor. I bugged Dan about spending all his money now on this little baby and the fun these boys were going to have. It was really great. Then the tech came back in with another tech. They said they needed to get a better image of something. So quickly they scanned and took a couple more pictures and walked out. Didn't say anything else to ask. Because of the set up of the ultrasound equipment I couldn't see what they were taking Pictures of. Dan could and he told me they took pictures up of her head. That's when the worry set in.

After what felt like a lifetime of waiting in that room our tech came back with a Doctor to explain what they had found. They had found a protrusion on her head. They weren't sure what that was and her brain ventricles were swollen and there was excess fluid in our head. We got a "we're sorry" and "you're doctor will call you". Nothing else was said. I was a mess to say the least. We had just gotten good news about a girl joining our family and then the vaguest news that something was wrong but we didn't know what.

Worry set in and replaced any joy and planning I had going on. The head is a big deal. Especially the brain. Luckily I got a call from my Doctor about an hour after we got home asking me to come in the next morning at 7:30. I was very glad I wouldn't have to wait long to find out more information.

We called our families and told them what little news we had and asked them to start praying. My Dad and Dan gave us a wonderful blessing that filled me with comfort and gave me strength. I was still pretty worried, but sitting there in my mind was the thought that things will be okay. It's a hard thought to hold on to.

The night passed slowly and we finally got to Dr. Topping's office. She is wonderful and amazing. We were taken in right away and my blood pressure was checked. She came in soon after us and was very glad to see my BP hadn't sky rocketed. It was higher but nothing to worry about. She asked us what they had told us yesterday and we informed her the vague details. She apologized and said she didn't have much more to tell us either because the report she got was very vague. She explained a little bit more about the protrusion and the fluid by saying they typically see this in kids with Spina-Bifida. I relaxed and worried all at the same time. Trust me, news like this and pregnancy hormones don't mix well.

She sent a referral up to a Maternal Fetal Medicine Clinic in Calgary so that we could get a more detailed Ultrasound done. She said they should be getting back to us soon and if they didn't call me by the next morning to call her so she could keep bugging them. She is honestly so amazing and caring. She said she would be thinking about us and that the Clinic in Calgary would send her all the information they got and that they wouldn't be "hiding" anything from us this time around.

It was after this appointment Dan and I decided to tell family and our close friends what we would be naming her so that they would know who we needed them to pray for. It has brought me a lot of comfort knowing people can pray for her by name and has given me strength. We are naming her Paige.

They called me back Friday Morning and said I had an appointment Nov 21 at 8:00. It worked out nicely because Dan had to be in Calgary that week anyway for work Training. So we had a hotel room already paid for by his company. Though Dan also has an amazing Aunt and Uncle who have opened their doors to us many a time.

November 21, 2017
Surprisingly we didn't have to wait to long at the appointment. They got us back in fairly fast and into a room where they began another Ultrasound. Luckily this time I had a screen down by my feet on the wall where I could see everything they were doing. They did a routine exam and we saw everything. Then they got up to her head. We saw the protrusion this time and they tried showing us the brain and ventricles and such. After this Ultrasound the tech left to go make sure the doctor(radiology tech doctor) received the files and then they went through them and came back together to try and get some more pictures and so the doctor could see what was happening in "real time". Then they decided to try and get some 3D images.

So we got to sit in another waiting room and wait for a tech who knows the 3 D machines. And then we began more images and pictures. Mostly her head and spine. The whole Ultrasound, all of them was probably close to an hour and a half. If you've ever been pregnant or had an ultrasound you know how "comfortable" those beds are. My back and hips were DYING!

They were finally satisfied with the images they had and took them to another doctor. The perinatologist, who after examining the images met us us in a consult room. They have one really comfy lazy boy chair in the room. So nice to sit in after that horrible "bed" I was on.

He explained everything and said he was pretty confident that she didn't have spina bifida. The protrusion on her head was at the top by the fontanels,(crown of her head the spot that comes out first in delivery). He said its what they call an encephalocele. A protrusion on the head that can contain brain matter and fluid. He said it was small but he couldn't tell us if there was brain matter in there or not. Then he said her ventricles were swollen and there was extra fluid in her head. He wasn't sure why but he was thinking there was a blockage in her aqueduct system stopping the fluid from leaving the brain and flowing through like it is suppose too.

Not good news at all. We knew it was bad when they gave us the option of terminating the pregnancy. Horrible news to ever hear when they give you that option. Dan and I were both quick to say that wasn't an option. I will carry her and I will birth her and have her for what ever time I am given. They were good and they wrote that down and they have never brought it up again. They offered us a chance to do an amniocentesis to check the genetic material and see if maybe there was a chromosomal abnormality that could be influencing this or be an underlying factor (trisomy 13, 18 and 21). We agreed to that and it was done that day.

The amniocentesis was really weird. They have an ultrasaound going at the same time so they can see where the baby is and where the needle is going in so they don't hit the baby. Luckily Paige sat really still through this. Dan of course got super queasy and when they were done he had to leave the room and go for a walk and get some air. I was a little bit sore and tender after which they said was normal. I also had to take it easy for 48 hours and not lift anything heavy or do anything strenuous.

We scheduled a follow up appointment for the next week so they could do another ultrasound and we could see what was happening and if things were growing/changing quickly.

Dan and I were messes after all this news and information and yet still many holes and things that were still unknown. Dan stayed up in Calgary to finish his training and meet with his manager about what was going on and start planning for Spring and what may or may not be happening in our world then. Dan's manager has been really amazing at asking how I'm doing and making sure Dan is doing good and making sure that things will be covered and taken care of if Dan can't be there in the spring.

That week was a very long week of my life. I felt like we should have passed Christmas at this point. We got results back from the amnio that the first round of genetic testing they did came back normal. So we set up a meeting with the geneticists to see what other tests could be done to "explain" if there was something causing all this. As much as I wanted something to be at fault for this I knew deep down that everything on a genetic level was going to come back normal. But we scheduled an appointment anyway.

November 28, 2017
The second appointment we went right into a 3 D ultrasound. They got a great picture of her face. Oh my goodness she looks so similar to Max. It's so nice to have "seen" her and I can almost see what she'll look like when she finally comes out.

It was only the one ultrasound this time but it was still well over 30 mins. Somebody invent a better bed to lay on please!

Meeting with the Doctor in the consult room we got the news that her encephalocele and her head hadn't grown dramatically. Everything was still in proportion to the rest of her. They really ruled out any spina bifida. Her spine was fully intact and formed. Her heart and lungs and kidneys and really everything from the head down is perfect! They didn't see any brain matter in the encephalocele and said that shouldn't change. Normally whats in there stays there. The smaller it stays the better.

What they couldn't see very well was her brain and what the brain is doing. She still had an excess of fluid and her ventricles were enlarged. They ruled out at this point any blockage and were stumped as to what was causing her ventricles to swell. They were pretty confident that her brain wasn't developing properly and hadn't separated like it should during the early stages of development. They called it Holoprosencephaly (HPE). Chances of survival were not good but They wanted to get an fetal MRI done so they could have better images of her head and get better accuracy. We tentatively planned it for early in the new year. Booked another Ultrasound two weeks later. And with all this news and stress we took off to Mexico with some friends. It was a well timed vacation that we so needed. We had so much fun and relaxed.

Came home Dec 11 and on Dec 12 we had another Ultrasound done. Not much new was given at this point. They were convinced of the HPE but her head was still doing fine. So we booked the MRI for Jan 3 and a follow up appointment with the Maternal Fetal Medicine clinic Jan 4.

January 3 we ran up to Calgary and got the MRI done. Not the worst thing in the world but someone invent a better bed to lay on! ouch. my poor hips and back are really taking a beating.

January 4 We had another Ultrasound and then met with a Doctor. First they told us that her protrusion on her head wasn't an encephalocele but much more likely a dermoid cyst. Nothing they were even worried about.
Then they told us she didn't have HPE. She has a severe case of hydrocephalus (water on the brain). It isn't draining like it should and like they thought it was. So her head is starting to get bigger from it now. ( when I saw the measurements on the ultrasound her head was measuring 2 weeks bigger than the rest of her. When typically its been maybe a week bigger). She will need a shunt placed shortly after birth to drain the fluid and then we watch and wait and pray that her brain will be able to "fluff" back out and see what damage has been done. It ranges from small delays to severe and seizures. They really can't tell us anything for sure. It's the brain and the brain is unknown to man. Many miracles have happened that doctors haven't been able to explain.

February 7, 2018
We had another ultrasound appointment plus meeting with an OB team and a NICU doctor. The ultrasound went by quickly. I have truly enjoyed getting to see Paige this often. One of the perks of High risk babies. They wanted to get some more 3D images done so we did those too. Then met with the team of doctors. They informed us that in the 4 weeks between appointments Paige's head had grown immensely. It is now measuring at 40 weeks. Which isn't good. It means she needs to come sooner rather than later. The bigger her head gets the riskier it gets for me. But there was still time so they scheduled us to come back in 2 weeks and to be prepared to have her if things didn't change.
The NICU doctor was very doom and gloom as well. It's really hard to hear that news about your baby. That she may not make it. But it is an outcome we have to accept and be prepared for anyway.

I went home a mess after this appointment. We are so close to the end and meeting her. The stress was really getting to me. It's hard to not be as excited as you typically are when you are pregnant. It's hard because we really don't want to tell everyone who asks. Not everyone knows. As people have found out its fine. I'm glad people know because it does make it easier.

I went home from this appointment really just praying that we wouldn't have to deal with preemie baby issues with everything else that she has going on. She has so much she has to face and overcome already. Just no preemie issues too please. 

February 21, 2018
Yesterday was a good day. Stressful but so good. We went up to Calgary ready and prepared to meet this sweet baby Paige. But, her head growth plateaued. Everything but her head grew. I don't think I've ever been so happy to hear that my child's head hasn't grown. Which means we get to keep her inside for another week. Another week for the rest of her body to mature and grow. Another week of stress and waiting. And another week to pray and pray and pray that we can continue to see miracles like this happen. If all goes well this week we will get to pick a date at the next appointment which will be shortly after 36 weeks, maybe 37 but we will just see what we are given. So far we have another week and I will take that.

Those who we have told and have found out keep commenting that Dan and I are handling this very well. Really I think its just a blessing that has come to us. Through all the prayers of family and friends we are receiving strength to keep moving forward. To keep trusting in the Lord and His plan for us. I know that I am a Child of God. That I am one of His beloved Daughters. I also know that Paige is too. That He loves her more than I can imagine and that He knows that together Dan and I are very capable of whatever will become of Paige. It's very hard to imagine my baby suffering and being in pain and all that she will and may have to endure in her time on earth.
It's easier to count my blessings and focus on the joy we have been receiving than it is to dwell on what may come and the pain and suffering coming.

I read a talk the other night from Jeffery R. Holland and in it he quoted George Q. Cannon "No matter how serious the trial, how deep the distress, how great the affliction, God will never desert us. He never has and he never will." This week I have seen a miracle. I have felt God's love for me and for my family and I know he is watching over us. He is giving us a chance to grow and come closer to him. He has not left me and He will not leave me.

So if you've stuck to the end of this blog post please add our family to your prayers. The road ahead is looking bumpy and bleak but we will make it. We are grateful for all the love and service we have received so far. Every thought and action means so much.