Millie Moira’s Story

Site created on June 30, 2021

Hello friends and family, thank you for coming along on this journey with us. We are so grateful to have a big tribe to follow along and support us. Back in April of 2020, we experienced a heartbreaking miscarriage, we weren’t far enough along to even tell people we were pregnant. So when we found out in November of 2020 that we were pregnant again, we did not take a single moment for granted. Jake and I found out pretty early on of our pregnancy (4 weeks and 2 days via an early at-home pregnancy test), we counted down the days until our first initial OB appointment. However, at 20 weeks we found out our sweet babe had some unique qualities about them. We will try to keep this site as updated as possible.

Newest Update

Journal entry by Katelyn Hassebrock

Our girl is SEVEN months. Who let this happen and how do we take it back? She is changing so rapidly most days it is hard to keep up.

 

We are so lucky to have such a strong-willed daughter.  She seems lazy, but don't get me wrong, she is just incredibly stubborn. More on this, let's talk doctor's appointments.

 

Peds:

Millie's pediatrician is impressed with her growth, so far she is right on track for a "normal" seven-month-old. (I am REALLY STARTING TO HATE the word "normal" tell me what kid is NORMAL). We saw peds in early Feb, so it has been a while. Millie was due for six shots and did NOT appreciate them (definitely takes after her dad). Labs looked good (in my opinion, endo might say otherwise). Otherwise, a clean bill and no complaints from the pediatrician. We did talk in-depth about what the future will bring as far as therapies, but currently, Millie is hitting milestones, so we will hold off on these discussions.

 

Conformer:

We made a trip to the cities for millie to get an updated conformer, they are still pleased with her progress. A nice short trip, hosted by Jake's aunt and uncle. Right now the plan is to stick to monthly visits to keep expanding the socket and eyelid. We'll see how it looks at the end of March!

 

Genetics:

Talked in depth about the gene duplication that Millie received from me (OTX2). To sum it up, they do not know enough and it's another "wait and see" sort of deal..my favorite. They'd like to do more in-depth genetic testing and follow-up testing when she is two years old. So far, we are declining. Genetics does not have much to offer us currently if we decline further testing, so we will see them again next year in case we change our minds. We will eventually need to see a genetic counselor if we decide to have more kids. We will cross that bridge when we get there because Millie is still very fresh (but I'd love for her to have a sibling someday).

 

Eye:

We were not pleased with this appointment, to say the least, but everything with a grain of salt. Millie's eye doctor has not seen her eye socket since she was one month old, so he took her conformer out, which is very traumatizing for her. She is also starting to internalize things, so anytime he would look at her she would cry. Any time we come near her bad eye, she cries. As the mom, it is really hard to watch and I do feel very terribly. She won't even let me put her eye drop in at night anymore. Too much negative touch. On top of this unwelcome visit, her doctor is recommending we see an eye surgeon for eye reconstructive surgery. Particularly helping stretch the eyelid faster in order to make more progress. His reasoning is so that her face stays symmetrical because babies grow so rapidly. He has put through a referral and I do think it is important to see the specialist, however, we are on the fence about having such a procedure done at such a young age. Lots to talk about, lots to consider. We have also talked to her eye conformer technician about this because he is also a great resource and currently he does not recommend she has the surgery done.

 

With all of that, we were elated to hear that Millie's good eye has near-perfect vision. She will be getting baby glasses to help protect that eye with a very small prescription, however, he said her vision is looking really good! She does have nystagmus (eye shake)  in her left eye due to it overcompensating for both eyes. This could be fixed with surgery, but right now is not hurting her so we will leave it. In order to stop the nystagmus, Millie turns her head to the side and keeps her eye crossed (looking at her nose). I was very concerned about this, the doctor said it is normal for babies with one eye to do this. She still straightens her eye, so right now it is nothing to worry about.

 

Our stubborn child knows how to sit and roll, but has been refusing too. Her interventionalist wanted to keep a close eye on Millie and said we would need to intervene in the next month if she didn't start doing it. Overnight suddenly Millie has decided that she ONLY wants to sit and roll. This girl.. Only doing things on her own terms.

 

BIG firsts:

-Mom's first weekend away

- First sleepover without mom or dad.

-First road trip without dad

-Sitting!

 

We are so incredibly proud of Millie. Sometimes it is hard to remember when we are only hearing bad news from the doctors, but she still is only seven months. We have a long road ahead of us, but we wouldn't want to do it with anyone else.

 

Enjoy this beautiful weather, friends! We love you ❤️

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