“Just enjoy your baby.”
There were so many moments when I was afraid of the future…
…and the present moment.
After joining the OI Parents Facebook group and reading over and over all the different stories and lives and beautiful children who I had now come to know and desire to watch grow….
…and after all the appointments we had been to, and conversations we had…
I realized that I was jumping ahead of myself.
I so desperately wanted Niko to grow up that I wasn’t giving myself permission to appreciate having a newborn…
Terror, stress, hormones and sleep deprivation will do that.
We were in the process of fixing up our current home so we could sell it and move into a new home that wasn’t finished yet.
Our kids started a new school in the district we would move into.
Thankfully it was close to where we used to live.
At this time, I didn’t want to eat much, I was experiencing postpartum hormones, and also sleeping in different places than my own bed… the couch, the downstairs room… it was a change for everyone!
Thankfully and wonderfully, I recovered very quickly from Niko’s birth.
I felt moments of physical anxiety that would pass, but not nearly the feeling of panic when I was getting to the end of my pregnancy.
I actually think my body recovered much quicker with Niko than with Truly…. Truly’s birth was very painful during contractions, not as much during the actual birth, and some postpartum bleeding left me weaker than normal.
My labor with Niko was hardly painful, slightly uncomfortable and clearly up-side-down during his actual birth.
It’s almost as though God said, “You’ve got to get to work girl…. fly free”…. as in my body….
…. it felt great not being pregnant anymore and not feeling that physical, emotional and mental pressure anymore.
But! The trials continued… and we went with all of our curve balls.
Moving, kids starting a new school… our son starting baseball with the new school.
We went for it.
Slow growth is very common in children with OI. I didn’t realize just how true this would be. Doctors love to see babies and young children fall on the chart… and follow a curve.
We soon learned that Niko had his very own, cute, little curve.
At our 2 week follow up appointment with our family pediatrician, Niko was 7 lb 4.1 oz with a HC of 34 cm. He was in the 15th percentile for weight.
10 days later we followed up with our new pediatrician at the complex care clinic at Children’s Hospital. His weight was 7 lb 5.8 oz. He had now dropped to the 4th percentile.
August 16th, which would put him at 1 month old, he weighed 7 lbs 6.9 oz. He was now in the 2nd percentile.
He was growing, and gaining… but dropping percentiles.
Looking back, I may have insisted more eagerly that this is completely normal. I even called an OI specialist doctor who I spoke with when I was pregnant and he said that as long as he is gaining, even just a little, I could keep doing what I was doing.
Niko was fussy and gassy around eating… I could tell he was having a hard time digesting… I think he had discomfort due to his hernia as well.
With his growth being slow, plus a little bit of blood in his stool, our doctor asked us if we would consider switching to formula specific for a milk protein allergy. This would give me an opportunity to wean dairy from my diet.
We put him on a stricter schedule, where I was feeding him in a certain amount of time and then going an hour or so until I offered him a bottle again. This was meant to grow his belly and help encourage his appetite.
I have always wanted to nurse, but considering the circumstances, I knew I had to try something and it would be ok.
A few days later we went in for a follow up and it had worked. He was now 7 lb 8.6 oz and still at the 2nd percentile.
However, I wasn’t interested in continuing because I felt like I was force-feeding him. He was spitting up a lot and although the blood in his stool disappeared after giving him formula (thank goodness), I still felt he was fussy and not taking well to the whole thing.
We decided to try reflux medication and wait for that to kick in. So much emphasis was placed on feeding, it was becoming exhausting. I was so nervous and worried that he would not gain enough weight.
August 21st, Niko weighed 7 lbs 10.8 oz and was in the 1%. He was about 5 weeks old.
August 28th, he weighed in at 7 lbs 13.2 oz and dropped to below the 1%.
Many children with OI fall off the growth chart…. or they hover below the 5%…. this was a new normal for us and it did take some getting used to…. I’m sure the getting used to will continue.
This is Niko’s Great-Aunt Ria…. Her faith is beyond this world. She recently came across some very special oil. It belonged to my grandfather, her father, and Niko’s late great-grand Pappy, Francis Capezio. He was a very faithful, spiritual man and a loving person for us all. We took it as a sign that Pappy was with us, and the oil was meant for Niko all along. Blessed by Aunt Ria!
First Surgery at 7 Weeks Old
On Sept 6, 2017, Niko had his first surgery, with Dr. Francis at Children’s Hospital. He was born with an inguinal hernia. Dr. Francis repaired it and Niko did great!
Sept. 11, 2017 – Follow up for weight check and he weighed in at 8 lbs .8 oz at almost 2 months.
Niko’s First Pam Infusion
After meeting a local OI mom and pediatric physical therapist, she thankfully took me under her wing! She was my saving grace. She talked with me about everything I needed to know and answered any questions I had about OI. She encouraged me to get Niko’s treatment asap and gave me the protocol and dosing that was recommended from one of the best hospitals in the country specializing in OI.
Although Endocrinology wanted to wait until 3 months to do the first infusion, I pushed my pediatrician to push them to get started earlier.
We were worried about Niko’s reflux and his feeding and I said to her, “We need to just make it to his infusion… we need to start treatment now.”
So on Sept. 18, 2017, at 8 weeks old, Niko was admitted to received his first treatment.
It would be two doses, each one being 4 hours long.
We were admitted on a Monday at 3 pm.
There was a mis-communication and the doctor on staff came in and said that she would rather wait until the next day to start the first dose, so there were more people on staff.
I soon learned how big my advocacy had to be.
We slept over night and started the IV and the first dose the following morning. Thankfully the IV team did a great job on the IV and the first blood draw, to take his calcium and other levels to start.
We would need an IV, and we decided against the PICC line first recommended by the NP and opted for a more popular point of access among other parents: a scalp vein IV.
What is Pamidronate
From what I understand about Pamidronate: It was first created to help older patients with osteoarthritis, to strengthen their bones. About 20 years ago, doctors started using it with children who had OI. Today, it is a proven treatment to help increase bone growth and density, and decrease bone pain, as well as the amount of fractures a child may have.
It is a treatment not taken lightly and only administered under special circumstances.
One mom in my group wrote the following, as a way to describe how she understood the treatment:
“People often ask me what Pamidronate does for OI. So here it is:
Pamidronate (Pam) is a type of bisphosphonate. It is often used with cancer patients.
There are bone cells with a job.
Osteoclasts🐰destroys old bone.
Osteoblasts🐢builds up new bone.
My daughter’s (Type 3) OI bones resemble a brick wall honeycombed with missing bricks. On X-rays they are wispy and transparent.
Her Osteoblast🐢 are like little three-legged, one-eyed turtles. They replace new bone ever so slowly.
Her Osteoclasts🐰 are like angry rabid rabbits tearing out old bone with a vengeance.
With the bone walls being torn down so much faster, it causes a few things. Bone pain, bone weakness and possibly excessive calcium in the blood.
Side note: 99% of the calcium in our blood comes from our bones. If the Osteoclast🐰 are tearing down too fast, there is too much calcium released. Not only are the bones lacking the calcium they need, but it can cause hypercalcaemia. Luckily, my daughter doesn’t have this problem.
Then comes along our friend, Pamidronate. It slows down Osteoclasts🐰. This gives the Osteoblasts🐢 the time they need to replace new bone. This allows for a denser bone wall to be formed, which helps to have less chances of fractures, and controls the release of calcium better.
Pam helps to bring back a healthy balance. They do blood test before and after receiving Pam to check calcium levels. If levels start falling too low, they know they’ve started tipping the balance too far the other way, and the turtles🐢 are beating out the rabbits🐰. At that point Pam wouldn’t be needed anymore.
There are, of course, other factors besides calcium that come into play on whether or not you should continue with the treatment, but these are the basics.”
There are risks that come with the treatment, as with any medication administered for the first time, and the greatest one is a fever, as well as drop in calcium.
We gave Niko Tylonel before starting the medication and he did so well for both doses. This process lasted two days… Day 1 is the first dose and lasts 4 hours. The second dose is done on Day 2, and there is at least 12 hours between doses. So we ended up sleeping over for two nights.
Niko didn’t get a fever and he had no complications or side effects. He did great!
..continued growth data
Sept. 22, 2017 – 2 months – 7 lb 11.5 oz … this was a little bit of a concern, but considering Niko was admitted overnight for his surgery, and all things considered, he had some wriggle room.
Sept. 28, 2017 – 8 lb 7.1 oz – Wow…. how did he gain so much weight? Was the last one a mistake? Did he take a big poop beforehand? Not sure… but it was nice to breathe a sigh of relief.
I’m so excited about this! Because Niko has a lifelong genetic condition, he qualifies for excellent health care, as well as early intervention services.
During this time, we start working with a physical therapist, an occupational therapist and a registered dietician that weighs Niko, and talks with us about nutrition. These relationships are a dream come true.
We won’t have to go to the hospital/pediatrician for weight checks anymore!
I tried a few different bins while giving Niko a bath. One of my favorites was the lasagne pan. Here he is in a plastic bin.
Here you can see his hernia surgery scars.
Baths were once just a necessity for cleanliness and now they are a necessity for muscle and bone growth. Water will be a big part of our lives!
He has gotten a more comfortable in the water since we have started.
Great-grandma Bebe knows just how to feed Niko! At this point, we are still having a hard time feeding him. He would spit up at different times and reflux was problematic. It still didn’t feel stable.
Me and this boy…. there is nothing I wouldn’t do for him or a distance I wouldn’t travel to keep by his side. My limits are pushed and everything I have in me is dedicated to serving this boy, and my family…. keeping us together and provided for… it’s a whirlwind and a very physical experience…. I am grounded in my work for him…. and for Him.
Because babies and angels… because babies see and are one with them… they know how they got here, they know who they are and why…they haven’t forgotten yet… these cards brought me many messages of peace, love, hope, guidance, miracles and divine inspiration during my pregnancy and we pulled these cards for #NikoGian … may we all be keepers of the light and remember that #archangelmichael is with us always: You are safe. Angels stand close. Surrender your concern and allow a miracle to occur.
I write this in present day…. and have had time to reflect upon this time.
… it was hard…
…. and it’s still hard, but these times were very hard.
Everything was knew, and I held so much fear about our baby.
I felt both immense gratitude for him, as well as deep anxiety about keeping him alive.
I was so worried about him eating enough… and breathing enough.
Every day was a gift…. every moment was a gift.
… and it still is…
I finally let the kids hold him … I’m going out of order, but these pictures were taken before his first treatment… I became very aware of the present moment… and thought if anything happened to Niko, or any of us, I would have wanted to live with as much enjoyment as possible… with as little fear as possible.
So I learned how to get better at living with the fear.
… and the joy.
Theo is explaining something to his little brother here… and I remember feeling like I didn’t know what would come of their relationships… there may not be wrestling, but there will be fun … I pray.
Just enjoy your baby … I thought… this advice from my OI mom friend had rolled through my thoughts… it was so hard to just enjoy him when I was waiting for another day with him… getting glimpses of his future.. would he walk? Would he run? Would he feel free? … and happy?
… Just enjoy your baby … so let’s do it.
Continue to follow us and Niko on our journey as we head into his 3rd and 4th month!