Tulip Tales: Nolan

I am so excited to share the story of this beautiful little boy named Nolan. Nolan is one of the children in my care at Little Tulips, and we are so happy to have him in our group. When Nolan's Mom first contacted me about a space in our child care program, we connected right away. There's just something about meeting another mother who has a child with extra medical needs, another mother who has spent countless hours at doctors appointments and hospital visits, another mother who "gets it". 

When she sent me this piece, Jan said, "I won't lie, it was hard to write. It's hard to read. But it's the beginning of his story, and we don't know where his story will go as he gets older."

It is a beautiful story. So please, pull up a chair, settle in, and read about our sweet boy, Nolan.

*****

When we decided to start trying to have a baby, I remember standing in the kitchen with my husband and saying “What if something goes wrong”?

I remember that moment like it was yesterday.

I enjoyed being pregnant. I remember where I was and what I ate before the very first kick. I remember all the kicks after. I remember hearing “it’s a boy” during our first ultrasound. I remember giving up anything with tomatoes in it after experiencing heart burn for the very first time in my life. I remember my poor husband telling me, again, to “turn on your side, honey, you’re snoring”. And I remember the day that my fears came true.

During our 34 week ultrasound, the technician was quiet. She said she wanted to run something by someone else and I immediately panicked. Five minutes later, we were brought to a room with our OB/GYN, who was in the hospital that day.

Our unborn son had hydronephrosis, excess water on his kidneys, likely caused by Posterior Urethral Valves (PUV), but an official diagnosis couldn’t be made until he was born. The congenital condition affects only boys and occurs in about 1 in 8,000 to 25,000 live births. It is not inherited in any recognized way and seems to happen in the early stages of pregnancy when the organs, muscle and other tissue starts to form. It is not due to anything a mother did or ate during pregnancy, it just happens. And it happened to our child.

PUV are extra flaps of tissue that grow in a boy’s urethra, blocking the flow of urine. The severity of the condition depends on the degree of obstruction. The doctors wouldn’t know how severe his PUV were until he was born. From that point on, I would receive weekly ultrasounds to monitor my amniotic fluid. We already had some idea that his condition would be more severe, as most mild-to-moderate cases aren’t identified until after birth. The fact that his was found during an ultrasound indicated a more serious case. If urine was backing up into his kidneys, which seemed to be the case, he could potentially be in kidney failure at birth. The PUV were also damaging his bladder.

Google was my hope, my devastation and my obsession.

We met with the NICU doctor and received a tour, knowing that we would be going there. We met the surgeon who would be performing surgery on our child to give him a vesicostomy (an opening between the abdominal wall and the bladder that helps prevent harm to the kidneys - he would ‘pee’ through a hole in his belly for the first year of his life to give his bladder a chance to relax). He would also have surgery to ablate (remove) the valves, but that wouldn’t happen until a year later; the vesicostomy would be reversed at the same time.

Nolan was born on May 30, 2014. He was beautiful. He was finally here. And his PUV were severe. On day 1, he had surgery. For 12 days, we lived in the NICU at the Janeway, but with no pediatric nephrologists here, the doctors were working closely with IWK Children’s Hospital in Halifax, NS. On day 12, we were transferred to the IWK.

Nolan had to have a Glomerular Filtration Rate Test (GFR) – a test to see how much function his kidneys had. We were told that we wanted to see the number 15. Anything less than 15% function would likely require immediate dialysis and transplant as soon as he was big enough.

The number came back. His right kidney wasn’t functioning at all. The left kidney was functioning at only 7%.

We were devastated and still trying to wrap our heads around the fact that our little boy was very sick, let alone the possibility that he might need dialysis and a transplant so soon. But our nephrologist was optimistic. He said he would do whatever he could to avoid dialysis right away. And he did it.

Nolan had blood taken every day for the first 8 weeks of his life, monitoring creatinine, sodium, potassium and other levels. We tinkered with medications. A LOT of medications. But the tinkering worked, and his levels slowly started to come down.

You don’t think about how important something is until it doesn’t work. The kidneys are important because they keep the composition of the blood stable, which lets the body function. Healthy kidneys prevent the buildup of wastes and extra fluid in the body. They keep levels of electrolytes stable, like potassium, sodium and phosphate. And they make hormones that regulate blood pressure, make red blood cells and help bones stay strong. Nolan’s kidneys can’t do these things on their own, so these medications help him.

So while we were learning how to be parents to this beautiful child, we also learned what each medication was for. How much to give. How often.  We learned that he will eventually need dialysis. We learned that he will need a transplant.

My husband had to return to work as he had been off for much longer than we anticipated. I brought my son home for the first time a few weeks later on July 12^th, 2014.

Since then, we have been very closely monitored by a great team of people from both the Janeway and the IWK. We have been hospitalized here at the Janeway for UTIs, which he is prone to. We regularly see his nephrologists, urologists, pediatrician, dietitians and many more health care professionals. He’s a pretty loved regular at the Blood Collection clinic at the Janeway. We’ve travelled to the IWK three times since we first came home – we’ll be travelling there a few times a year for a very long time. At each visit, his GFR results have improved – from 7% kidney function at birth, to 30% kidney function in May 2015. His right kidney also appears to have shown up to the party – it’s doing a little work as well. Better late than never!

Nolan’s PUV presents a number of challenges, based on the severity of his condition. Obviously, the damage to his kidneys presents the most pressing medical issues, but the PUV has its own challenges for his bladder and urinary tract as well. We don’t know for sure how it will affect him, but from speaking with his urologists and other parents of PUV boys in a support group, we’ve learned some possible impacts for the future. He may require frequent catheterization or other types of intervention. He might do well with medications that are frequently used to treat the bladder for PUV boys. We just won’t know until we get there. Every PUV story is different.
 
What we do know for sure is that he has Chronic Kidney Disease (CKD) because of his PUV, and there’s no reversing that. He will need a kidney transplant. We are hopeful that we can get to age 7 or 8 before we need to go down that road. But again, we just won’t know until we get there.

Nolan’s kidney failure causes problems in his everyday life, but, like a lot of chronic illnesses, you’d never say it by looking at him. Kids with CKD feel pretty yucky a lot of the time. Nausea and vomiting are very common. Lack of interest in eating is also very common, which contributes to slowed growth. Because of this, Nolan had surgery to insert a G-Tube just before his first birthday. We struggle with solids and cheer whenever he eats the smallest thing. We experience the nausea and vomiting every day – the first year was a messy one! But we also experience giggles, clapping hands, smiles for his mama and daddy and all the things that we hoped for when I was pregnant and writing in his journal.

Despite his CKD, Nolan is a happy child who is meeting all his milestones. He is all about trucks. All trucks, all the time. He loves his thumb and his blanket when he is sleepy. He loves his dog, Baxter, and chasing mama to the end of the hall. He loves raspberries on his belly from daddy in the mornings and his friends at daycare (another miracle – we were told very early on that many mothers of kidney kids are not able to return to work. Luckily for us, Nolan is doing well and there are people like Julie and Andrew in the world, and they are a part of our circle).

But, like any mother, I still worry.

I worry about Nolan’s growth. I worry about the problems we’ll have with potty training. I worry about how other kids might treat him. I worry about infections. I worry about dialysis. I worry that I won’t be a match for a kidney transplant. I worry about his body rejecting whatever kidney he does receive.

But all the worry in the world doesn’t change the fact that we have a handsome, sweet, funny, strong-willed little boy who has a beautiful circle around him – family, friends, neighbours, health care professionals, child care professionals, pharmacists and even strangers. I’ve said it many times – Nolan might not yet know how big and beautiful his circle is, but until he does, we certainly do know it, and we appreciate every bit of love and support we have received since his birth.

Having a child with a chronic illness is not easy. For a long time, I found it very difficult to be around “normal” babies. I didn’t want to be the mother that other mothers pitied because her child was sick. From our many hospital stays, I’ve learned many things that I never thought I would need to know. I’ve met many families who are facing extraordinarily hard battles with their children’s health. I’ve learned that there are no guarantees for anyone in this life. Not even sweet, beautiful, innocent children. And that every day with them is a gift. It’s not always easy; sometimes it’s the hardest thing you’ll ever do. But it’s a beautiful gift.

We have been very lucky. While we might struggle with eating and growth and nausea, Nolan is doing very well right now. I know that we will have hard days, and even devastating days. I know that dialysis will be an adjustment for all of us, but mostly for Nolan. I know that I will be a wreck on transplant day. But I also know that we will have good days and that whatever comes our way, we will get through all of it together. With Nolan. With our circle. And he will always know that we are there with him, doing the best we can for him, because he is worth all of it and more.

He has shown us, so many times, how strong he is. We are so proud of this kid, so proud to be his parents. Our lives might not be “normal”, but whose life is normal, anyway? Medications, feeding tubes, frequent appointments - this is our normal. And it’s awesome. It’s awesome because Nolan is in it. We soak up the good days and cry on the bad. But every day, we know our boy couldn’t be more loved.

That day, in the kitchen, my husband reassured me that our yet-to-be-conceived child would be fine. And that if, indeed, anything did go ‘wrong’, we’d get through it.

He was totally right.

Look at this face.

Totally right. Even when things go ‘wrong’, they can be perfectly right.

*****

Jan, thank you so much for sharing Nolan's story. Thank you for trusting Andrew and I with your precious boy, and for including us in the circle of people who love and care for him. It truly is an honour to be able to spend time with him and to see the joy in his face and the wonder in his eyes! Nolan is an amazing little boy, who is curious and capable, and full of life!

Seeing your child go through all that Nolan has had to endure, and the struggles he will continue to have would be hard for any parent to accept. When raising a child with medical issues or extra challenges, a certain amount of pain is unavoidable, but so is joy. Our children are a gift, and we have the incredible opportunity to watch them grow and look at life and be grateful for all of the amazing things that we have. Nolan is strong and he is a fighter. You are strong, but he will make you stronger. There will be days that are hard. Weeks that are hard. Months that are hard. But you can do this. You are the perfect mother for Nolan. And just like you said, he is "perfectly right".

*****

If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  Please include a brief description of your child and their condition, along with any pictures you would like to share.  I will contact you with specific questions.

Thanks!
-Julie