Niko is almost 1 + 6th infusion

Niko will be 1 next week!

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Can you believe it!?

  • 26 fractures at birth
  • 13 hours of labor for mom
  • 6 IV infusions
  • 5 days in the NICU
  • 4 prenatal ultrasounds
  •  3 siblings who adore him
  • 2 parents who are beside themselves with his presence
  • 1 big birthday boy
  • + 923 miles to Omaha and 227 miles to Delaware for specialist consults + Countless moments that made us hold our breath and many many more that bring us joy, relief and gratitude…. for God’s grace, God’s mercy, and the opportunity to take this ride.

I will write about our recent trip to Omaha in another blog post. We visited The Children’s Hospital of Omaha at the end of May for a consult with specialists who work with many children and babies with OI. Spoiler alert – Niko is doing great and although he is still at risk of fracture, his bones are getting stronger.

Last infusion of his first year

Niko had his 6th infusion last week, and this rounds him out to 6 total for his first year. He will have approximately 6 next year, one every 8 weeks.

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We visited the Children’s Hospital of Omaha’s OI Clinic a few weeks before this infusion. We are following Omaha’s protocol for administering Niko’s medication, Pamidronate (Pam for short). For his first few infusions, we did them in-patient, which means we stayed overnight at the hospital. The last two infusions we did them out patient, in the infusion center. Niko kept his IVs in overnight and I flushed them twice for the next day.

This last time, we got the go-ahead from Omaha, that we could do the infusion at the infusion center in one day. We continue to work with our endocrinologist to provide Niko the best and most diligent care. Each time, however, comes with a plethora of challenges, anxieties (for me and sometimes for the nursing staff) obstacles and unknowns.

This infusion was special for a few different reasons.

  1. It was his last infusion of his first year…. considering I have prayed for this day, not knowing if I would ever see it, I am still coming to terms with what this feels like.
  2. He is that much stronger than the day he was born because he has been able to successfully receive this medicine that has without a doubt made his bones and his abilities so strong.
  3. This would be the first infusion we were doing in one day. Risks, although low, still exist,  no matter how/when the medicine is administered.
  4. Our other two kids were performing in a local play during the evening so I had to be back for it. But Niko’s infusions are top priority. So, I knew since this would be our new normal, we would be able to do this. Infusion by day, performance by night. I did a lot of planning by talking with the infusion nurse ahead of time, confirming with our doctor and his clinical nurse…. prayer, prayer and more prayer.

This picture I have above is important because it includes not only our infusion nurse, but also two of our IV team nurses.

IV placement makes all the difference for Niko.

We have come a long way. One of our IV nurses, Jonathan, did his IV successfully and we both sat in remembrance of when Niko was 2 months old and we were in the lab with him, out of vein options and Jonathan used his ultrasound machine to access a thigh vein.

Niko can’t have a tourniquet placed and it was the first time Jonathan had ever done an IV on a fragile baby with OI. I remember him holding his breath and sweating when it was over … he did it and he did a great job. Him and I reflected on that and shared a moment of appreciation … for how far we have come, just how far Niko has come…. My gratitude for nurses and the IV team like Jonathan who has made all the difference in our quality of life, and the life that Niko gets to live so joyfully.

We laugh a lot… and recover quickly… although it’s not always fun and games… I don’t post the pictures of pokes and pain … fear and anxiety, mainly mine … but the good by far outweighs anything else … We have a wonderful team from beginning to end that helps us help Niko … and the pain of IVs only lasts a short time and he’s back to laughing and joking with nurses again …

We only had one hiccup and it was when the meds came back from the pharmacy with the incorrect saline amount. It’s not a huge deal, and it’s happened before, but it’s wrong and I caught it. The nurses debated on adding saline to the dextrose already in the script but our infusion nurse called pharmacy and they wanted to do a new one and bring it up quickly…. which they did.

Thankfully, everything else went smoothly and we left in plenty of time to catch the show!

Our infusion nurse here is retiring and she has really set the bar high … Your prayers are felt fully as we are continually guided and protected on our journey… all is revealed and I know God is with us always… even when it doesn’t make sense, even when it’s painful.

 

Niko loves the pool, playing with his brother and sisters, laughing at his mama, but won’t say “mama”…. but says “Dadda” and “Nana”.

He eats anything he is allowed to eat, but would prefer to feed himself everything.

He likes yelling for fun, back and forth with his brother and sisters, he likes listening to them sing and dance numbers from Mary Poppins Jr., and loves to be doing anything as long as his family is nearby.

 

 

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