Hazel Rose's Journey

06/14/2025

So many special moments have taken place over this last month. Two we haven't shared yet were finally being able to go visit some of her NICU team from Stormont Vail, and my OBGYN Dr.Blake and her nurse Hailee with UKHS, St. Francis Campus.

I knew it was going to be very emotional for me to see all these people, because they are the reason Haze is here today. Each of them played a very important and special role in why we were able to successfully transfer Hazel to CMH on day 37. We will always be so grateful for each of them.l

06/13/2025

We are so proud of you, Hazel! 🫶🫶

https://www.facebook.com/share/p/1CZVdbwxY4/?mibextid=wwXIfr

Two years after weighting just 13 ounces at birth and one year after coming home, Hazel Rose not only is surviving - she’s thriving.

04/20/2025

Hazel's first Easter home and we are so thankful!

Happy Easter from our family to yours!

11/01/2024

Great news! No seizers detected for Hazel and we no longer need to be seen by the specialist, just by our general neurologist. 🫶

10/29/2024

We are underway with our 24hr EEG. Fingers crossed they don't find any seizure activity going on.

I might be a tad biased but I think Hazel makes the cutest patient even with 26 stickers on her head.

She's been in a great mood today. I contribute that to being seeing all of her old
NICU Nurses, RT's, and Child life staff that means so much to us.

Prayer's everything comes back normal 🫶

10/20/2024

Hazel update:

We are really starting to move. I think we are going to be crawling anytime now. She goes for her EEG next week, as long as insurance gets on board.

We had to fire one of our night nurses last week. We are asking everyone who is around Hazel to wear masks to help protect her from getting sick this winter. She has severe lung disease and a tracheostomy making it very scary if she were to catch anything. It would more than likely put us right back in the hospital. We know this time of year is going to be rough and we will do anything we can to help keep Hazel home with us.

I'm not sure why this nurse even picked Hazel up knowing her medical needs, or why she is in home health or healthcare in general. This is a very common practice and should never be made into a political issue. Anyone who comes to see Hazel is masked besides Cory and I. We are very aware this will not be a guarantee to keep her from getting sick but it's an extra barrier between someone else breathing directly on her.

We also wear masks when out and about. We've limited ourselves to even doing things with large gatherings and will be sacrificing being with extended family yet again this holiday season. So for someone else to make suc a big deal about wearing a mask on her one shift a week with Hazel is shocking to me. The silly thing is we even said just to have it on while in with her. She sleeps through the whole night and only gets meds in the morning. She is assessed at the start of the shift, maybe one -two diaper changes and to start and stop her feed. The rest of the night no mask needed. I was stunned to hear she actually went to the nursing company to complain. Obviously the company agreed with us, especially since this is our home and our child. 🤦🏼‍♀️🤷‍♀️

The good news is we have a new nurse starting this Monday and we are so excited to have her. I made sure she was okay with the masking and she literally chuckled that I even had to ask her that.

❤️

10/08/2024

Thank you to everyone who purchased a Hazelnut shirt. We are so grateful!

We do have some that hae not been picked up yet. They are currently at Martinek and Flynn 118 SW Roby Place.

Feel free to pick up from the Shop Monday - Thursday 8-5 and until 4:30 on Friday.

If you can't get to the shop, give me a call or reach out to my cousin Julie Ann to see if we can make some arrangements to get you the shirt.

🫶🫶

10/03/2024

Update:

Everything went well. We are a little out of it but getting back to our feisty self!

Nothing alarming on the scope. Will get the biopsy results in 5-7 days.

Thanks for all the prayers and well wishes. ❤️

10/03/2024

Hazel has her upper GI scope this morning. Praying for answers and that everything goes well. Hate she has to go under but we know she will be in good hands. 🫶 she doesn't look to excited this morning 😂

09/28/2024

Hazel's newest accessory! She's doing so well with her glasses!

09/22/2024

Hazel update and some photos from this past week:

Hazy girl is doing lots of big stuff lately. We've had lots of appointments over the last few weeks. Over the next month, she will have a few different things done.

We had a scope of her trach the other day and everything looked pretty good.

We will go for an upper GI and shouldn't need to stay overnight as long as no complications from the anesthesia.

We will have an EEG to rule out any seizures

We will also have an ABR hearing test where she will need to be asleep through it and hopefully avoid needing to be put under anesthesia.

She is also getting glasses in the next week.

Hazel also has 12 teeth... yes 12!!! 👀
She's really trying to sit up on her own. PT and OT with Capper have been going great and TARC has been helpful with getting us some equipment to have at home. She should be getting her stander in the next few weeks.