The Present-Feedings

So Elijah has a g-tube (please look at medical FAQs) and with kidneys most kidney kids have little to no appetite for food or milk. It actually usually ends up being a hard thing to get them to enjoy after transplant I have heard.

Everyday, I do 3 daytime feeds, I give him as much as he wants through a bottle which can be 10ml-30ml averagely. Then the rest through the g-tube.

After, I have to clean the bag with the pump and water as we only are supposed to use one bag in 24 hours. It gets very hard when we are out and about and I have had to clean it into a Starbucks cup in the middle of the mall once.

It used to give me a lot of anxiety to feed him out in public, because of looks from people, pity, concern and whatever else. But mostly it's just a lot of dang work. I am getting better with it though and I have learned a lot tricks which if anyone is interested I can add later as well!

The Present-Puking

So this one I touch on with people briefly but I don't think people know truly what I mean when I say Elijah pukes a lot.

It has been something from almost the very beginning once he started being able to eat. I personally feel that if he wasn't a kidney baby he wouldn't be a puker. When he's feeling good and everything is smooth, he doesn't puke or even spit up. But if his dialysis went rough the night before and he is too "wet" or too "dry". Or so many other factors he will throw up, and a lot.

I have heard from people who do dialysis as adults or order kids that sometimes when you wake up it almost feelings like you are hungover. With what I have seen Elijah in the mornings this would make sense. He usually dry heaves every morning after we get up. It's hard as a mom to watch this, I try to stay positive and make sure he knows I'm there with him and he's not alone in this.

I always have a blanket, multiple sets of clothes for him and a towel under his head usually when he's eating, and just I "puke prepare". We have both been covered in puke an uncountable amount of times. I do my best to make sure everything is going smoothly but I have had to accept that I can't always make it right and this is just part of our life. I hope as he gets older it gets easier for him.

The Present-Nighttime

This is what my counter looks like every night.

I wash all his bottles, syringes, g-tube bags so I can reuse them as you only get a certain amount a month (otherwise I have to pay out of pocket).

He does most of his meds at night right as I set him up on dialysis as I find that makes him puke them up the least. I also prepare his feeds for the night of and next day and they have to be special amount of formula to breast milk to water and ensure mixture. 

I find it easier to prep the formula power in the bottles I will mix earlier and I do the meds usually around 5pm prepped so I'm not trying to do everything at once.

At his last feed given through the day is near the end that's when I mix his night and next day feeds and prep them into containers to pop in the warmer.

Throughout the night he's on a continuous feed but it only is good for 4 hours in a bag so I refill the bag at 10:30pm, 3:00am and end it usually around 6am.

The Past-Gender Reveal

I would like to start with what happened and how we found out something was different Elijah from the beginning.

There's a lot to this day, the gender reveal party, first time my ex's family and mine met, the ultrasound that changed everything, and my ex possibly not showing up because he was in the hospital.

I knew that my ex and I possibly were never going to make it because there was so many signs even before this day or before even getting pregnant. Looking back, I just refused to see them. But let's talk about this day.

The night before, my ex tried to attempt suicide, kind of. He sent me a video of himself eating a bottle of pills, then I sent that to police and helped them find him and he was taken to the hospital.

The party was already planned, people were already invited, the gender reveal ultrasound already booked. For me, I was confused on what to do, and what the right thing was to do. My ex and I hadn't been in a good place and I was so lost on how I felt even being pregnant at all anymore with this man as the father, as I will explain later there were already really controlling signs before this. Both of us decided to keep the party going and to do the reveal still.

Even though originally I just wanted it to be the two of us but as I said we were already not doing well so when I thought it was just to be me when my ex was confused on if he was going to partake in our lives anymore I ended up inviting my friends and family to view the ultrasound. My ex changed his mind and wanted to be apart again so I changed it to a gender reveal party for everyone to come to. Which funny enough, is what he wanted.

Anyways, on the day of, the ultrasound tech came to our place. Set up the machine and tried to find out if it was a girl or boy to write on a piece of paper I could give to my friends. While she was looking, it took awhile, and I noticed she seemed a bit distant and upset. Now looking back, I think she was trying to figure out how to tell us. 

She explains that she isn't a professional and technically isn't supposed to say anything but she found the gender and something else.. that the babies bladder was bigger then normal and we should get it checked out professionally. She left in a hurry after that and never asked me for the money. We didn't even get a photo. 

I should of been more nervous at that point, we both should have but I tried to still enjoy the day and tell my family when I had the chance in secret as to not ruin the mood.

After that, we decorated, took photos, ate good food  and let my friends prepare for the gender reveal! As you know, it was a boy. 

I think that was one of the last days my ex and I had true happiness and fun.

The Past-PUV

Here is a couple of days after the gender reveal what my ex left outside my house for almost a month and a half before I had to pay to remove it. Pregnant, scared, sad, and unsure of what to do and what my life was about to become.

We were still in contact, we still saw each other and he did end up coming back to the house after many arguments and battles. We tried to make it work, he said he would promise to stop calling me names and would be nicer to me. That he wanted this to work.

We also found out in this time that our son had Posterior urethral valve. I have added an explanation to what that is in medical page! But it is why his bladder looked so big on the scan. It is also the reason that his kidneys are the way they are today. 

The Past-Chromosome

This is my favourite part of the our story and I hope you, dear reader, think so too.

So I can't remember exactly what week of pregnancy this was but my ex and I were together and it was after finding out and learning more about Posterior urethral valve.

I went and had an amniocentesis (medical FAQs) to make sure it wasn't genetic and we both also got tested. It's not genetic luckily, just the luck of the draw. While getting an amnio they also had to go into his little tiny bladder in my tummy and release the urine and test it. When they were explaining what I was supposed to do I did NOT really understand what was happening until it was. It was (sorry for my language) fucking traumatic. They had to go into 3 different times. And I will attach the photo of the reaction I got after from it.

They found out he also has a chromosome deletion. I know this doesn't seem like it would be one of my favourite parts of the story but I'm getting there. 

He has a deletion of his 19th chromosome on the long arm, there's only 33 in the whole WORLD recorded with this deletion. They told us he may never learn to walk or talk. It was.. hard. It broke me and my ex. We cried for days, he stopped working almost fully, I decided to go on medical leave before this already. After that we went back and forth on if we should terminate, at this point it brought us closer then ever but it was built on trauma and sadness.

I decided we needed to get away for the weekend. He wanted to keep Elijah, I thought we should terminate. I didn't think it would be a good life for him or us. He wouldn't walk or talk, or have working kidneys and who knows what else. They really painted us an awful picture of what was to come. With no real facts of the truth.

Throughout this conversation with everyone, I said over and over I feel like I'm fighting with my heart vs my head. My heart says "keep the baby, it's YOUR baby" and my head says "this won't be a good life for him and if you keep him you are being selfish".

Well, we decided to go to Nanaimo, get away, try and distract our heads. On the way up island, I see this giant billboard that says "follow your heart" with a literal doctor holding a baby. I started bawling my eyes out right there and then. After that, when we got to Nanaimo we couldn't figure out what to do, so we decided to go for a walk down the boardwalk. Along the water was this huge market for families with children with disabilities!!!!!

Two huge signs, of keep your fricken baby Jessica.

After that trip, I just felt like maybe the signs were telling me something. To keep Elijah. Maybe everything they were saying were wrong, who knows. Either way I was going to see after that.

Whoever was looking over us that weekend, changed my life forever.

The Past-Getting to Vancouver

Theres some drama between my ex and I that I'm going to skip over, it doesn't change the outcome of where we are today. I learned a lot about myself in that time and grew some really close connections with mom friends that I cherish so much today.

Long story short though, there were some things that happened that went to court and I have a "no contact" order whenever I feel is necessary. It will come up in another part of how I came back to the island so I feel it's necessary to add for context.

My ex and I seperated for about 3 months during my pregnancy. I went on and I was super happy about being a mom. We ended up getting great news at the 20 week mark that Elijah had peed!! So no more blockage. For like 7 weeks I was very hopeful and so were the doctors but I still had weekly to bi weekly ultrasounds just to make sure everything was okay.

Unfortunately, they started to see cysts covering his kidneys and we started to plan that I was going to have to have Elijah at BC children's hospital. He was still holding on and growing but his kidneys were not promising.

I ended up doing a lot, I moved out of the place I had with my ex and packed up my whole place while pregnant and one late night of packing, I felt my pants get wet but I didn't think much of it at the time.

Turns out my water broke, I went to VGH a couple of times but they couldn't guarantee and sent me on my way but his amniotic fluid was getting lower and lower. At this point I started to panic a bit and I had this overwhelming urge that I needed to call my ex.

I called him while going to the hospital one night and after that we started talking a bit, I was scared overwhelmed and felt like I needed someone that has been there and done this with me. Because 29 weeks was too early for him to come, he wouldn't make it.

I ended up having an appointment to go meet the doctors at BC children's hospital, just for a day trip. Get a hotel the night before, then meet the doctors the day after and go back home. So I asked my ex to come with me for support, he agreed as he wasn't working at the time.

Well, the doctors said yes they think my water is broken, and that I cannot go back to the island at all or I would have to sign that I went against medical advice. At the time, my ex and I just started talking again, I just got a new place (literally 3 days before coming), my whole life, clothes, belongings. Everything was on the island. So after I panicked a bit, we agreed to stay and I got admitted for 2 days before getting put back in a hotel to wait for Ronald McDonald house to open back up.

And that's how my ex and I got stuck in Vancouver together and essentially got back together.

The Past- Elijah is here!

This one may be a bit volgur and if you do not like birth stories I would suggest don't read it.

All in all everything went great for the month and half in Vancouver before Elijah came here. My ex and I were doing well. Elijah wasn't showing any signs of coming. 

They gave us a minimum of 34 weeks for him to be of size and weight of 2kg for him to be able to be on dialysis and survive. At the time of that meeting I was only 29 weeks so I was pretty shocked to say the least as I thought I was past the point of that conversation of him not surviving. I had a friend have her baby and she survived before that so I thought I hit the safe zone. I was wrong and then I got really scared again. What if I went through all of this, fighting, crying, heartbreak, excitement, planning for him to not even make it to birth. It was devastating.

But, that's not Elijah. He was a fighter. He IS a fighter. 

Well as the weeks went on, we went to get scans 3/4 times a week and lived at Ronald while we waited. He was breech at the time and now there was no amniotic fluid at all. The doctors said I would have to have a c-section because it was impossible for him to flip without amniotic fluid. As you can probably pick up with how amazing my son is, he basically laughed in their faces hearing that. The NEXT DAY, after I was told that, he flipped. Still amazes me to this day thinking about that.

Now comes the gore. 

Coming into my 35th week I get pains, and really bad hip pain. Turns out when I go into labour it's all in my hips. You would think that this being an amazing hospital that the doctors and nurses would be experienced and knowledgeable in all kinds of labour. Unfortunately for my story I was traumatized in my birth story because of the lack of acknowledgment, that I was in fact in labour.

I was in labour for about 4 days in total, I went back and forth from Ronald to the hospital trying to say that something doesn't feel right and is different. On the 2nd day, they finally admitted me. I got put in this very small, very old room. My ex had this tiny mat to sleep on and I was in a lot of pain and no one believed anything was happening. They checked me, said nothing has progressed and went on their way. I took morphine for the pain eventually, and tried to get as much rest as I could but there barely was any at that point. I asked and asked to get an induction so I wasn't exhausted by the point of me actually giving birth and didn't give up. That never happened unfortunately.

On the 3rd day/night I got checked again and as usual, no I could not get an induction because they were busy and no I wasn't progressing. After that check though a bit later my mucus plug dropped and I wouldn't stop bleeding. I showed the doctor to show that things were indeed progressing and she just said that it was from the check and not to worry, I wasn't progressing. Well, I was and so I started putting all the bloody pads all over the bathroom to show them, something is happening. Eventually my ex went to sleep and the morphine wasn't doing anything and I was in agony, I couldn't sit, couldn't walk, couldn't do anything. I was exhausted and in so much pain that I just leaned over the bed and swayed for I'm not sure how long.

I am going to skip over a little bit here but basically I almost had him on the toilet in that room. Finally they came and saw me after I started to "walk" over to the nurses to beg for help and they almost refused to call the doctor, until my ex yelled at them. I went back to the toilet as it was my only form of comfort at that point, I was shaking and just done. They very slowly got things organized and brought me to labour and delivery. I asked them so many times that I wanted to get an epidural, well by the time I got to labour and delivery I was 10 cm dilated and I pushed out Elijah 30 min later.

One good part of no epidural is I was able to walk to my son right after giving birth because they took him away from me. There was a nurse holding a blue absorbent pad underneath me because no was stopping me from seeing my son.

Bit of a rough read this one but it's just part of our story I didn't feel like I wanted to leave out.

The Past-NICU

So Elijah is born! Yay! It's overwhelming it's exciting, it's terrifying. Because after he came out and they took him away they instantly put him on breathing support, they attached wires, which he proceeded to rip off and he looked terrifying to a mother who just went through a trauma of a birth.

I had a room on the other side of the hospital to "recover" and my son, who I just pushed out of my body and fought for months to live, is on the other side in the NICU. So as me being me, I said fuck that and barely was there which made the nurses very upset.. oops. 

The day of and days after having Elijah was so many doctors and nurses around him and in the room we could sometimes not even stand near him. I am so grateful for the effort from everyone that helped get my son to stability but man was it overwhelming. This neonatalogist, came up to us the day of having Elijah and told me we may never get to take him home. After all the struggle and talks and signs, I may never get to take my son home. It broke my heart, I shut down and I don't remember much of that time. I wouldn't let it break me and I would still be a strong ass mother but it was hard. I turned that sadness into anger though, as no way that someone just gets to come here and know nothing about my son and how we got here and say he won't survive. He would prove them all wrong, and as you know, he did.

We had a big meeting on another floor in a giant confrence room, with the Canuck team which is palutive care, neonatologist, social workers, nephrologists, and cardiologists. Let's just say, it was intimidating. I was still determined to make it known that they don't dare to EVER say that to us again, in that room or to us in general. The Canuck team can go to someone else but they didn't know my son, and my son was a fighter. 

After tweaking and an amazing team of doctors who listened and respected our wishes, we figured out what we could fix and well, we fixed. He had a dialysis catheter placed a couple days later in surgery. After being born he was found to have a narrowing of his aortic valve and they were able to stop that while we worked on his breathing and kidneys with medication and that gave us time. We gave him a medication that helped him pee, which for some kidneys kids it does nothing but for him it worked! So that gave us what no one thought we had, time!

2 weeks after being in the NICU, healing, off breathing support, off heart medication because he was able to keep it open on his own, and ready to start dialysis he was moved up to a more stable wing of the hospital which we spent most of the rest our time in the hospital. 

And everytime I see those doctors that said he wouldn't make it or had doubts. I very happily get to say I told you so with a smile.

The Future-Transplant

Let's talk about what the future could look like!

Elijah has a lot to go still but he needs to reach 15kg to get a transplant to fit an adult sized kidney. Usually that's about 2-3 years old depending how fast they grow. 

He can get an alive or deceased human kidney and won't be possible to know who's able to until we get closer to transplant time. 

He will be on dialysis until then. After transplant he could live a relatively normal life with the help of medications, schedules and lots of love. 

From what I have heard transplant isn't a forever fix and he made need multiple throughout his life.

Questions?