Rheo and Aurora’s Story

Site created on August 21, 2018

Thank you for visiting our Caringbridge site! We will try to keep it updated as often as possible. Here is a little about what has been going on the past several months. 

In May we found out that I was pregnant and due on December 18th, 2018. On Tuesday July 31 I went to my 20 week ultrasound. We found out that we are having a little girl that we are naming Aurora Kay. When we got back to my mom’s house I got a phone call from my doctor. He told me that they saw something on the ultrasound, and that the baby likely had Myelomeningocele spina bifida between L5-S1 region. He then referred me to a U of M specialist and set up an ultrasound for the next day. 

We went to the appointment, and they confirmed the diagnosis. The doctor explained to us the three options we had. We could terminate the pregnancy, our baby could be delivered at term via c-section and have the lesion repaired within 72 hours, or we could have a fetal surgery performed to repair the lesion. After hearing some of the benefits and disadvantages, we asked to be referred to the specialist at children's Minneapolis Mother Baby Center to learn more about the fetal surgery. 

On Monday August 6th we went to the specialists for appointments that lasted the whole day. We learned a lot that day, and are honestly still processing most of it. The gist is that Aurora’s neural tube did not close between L5-S1, and that there is basically a fluid filled cyst around that area of her spine. She has a hindbrain herniation (common in babies with spina bifida) and a lemon shaped head. Both of these could likely be reversed by fetal surgery. She has movement of her all her limbs, but possibly restricted movement in her ankles. However, she does not have club feet, which is a good sign. Another good sign was that her ventricles in her brain are normal sized. This means there is not a buildup of fluid in her brain, and the likelihood of her needing a shunt at birth is small if we have the fetal surgery performed. 

Although there are many good signs that she is doing well, amniotic fluid is believed to damage the nerves. Having the cyst around her lesion does not protect her from the amniotic fluid, and could cause more damage leading to more problems. Fetal surgery would stop further damage, and give her a chance at a better quality of life. 

I have had many tests performed, and have had a lot of appointments. All to see if I can be approved for fetal surgery. Today, August 21, 2018, I got the call that the final test result came in. I can have the surgery. Friday August 24th I will be going in for a final ultrasound before surgery and steroid shots to help Aurora’s lung growth in case she is born prematurely. 

As of now surgery is scheduled for August 28th. This is an invasive surgery where they will open up to the placenta, and expose the lesion on Aurora’s back. They will then close up the lesion either with the skin that she has there or a patch that her skin will grow over. They will then close everything back up. Both Aurora and I will be under general anesthesia during the procedure. I will then be spending 5-7 days in the hospital, or until the doctors feel comfortable sending me back to my parents’ house. I will then continue staying at my parents’ house on modified bedrest until Aurora is born. 

It is going to be a long recovery, but I have a great care team and a wonderful support system at home.  Aurora could be born anytime from the time of surgery on to 36 weeks (week of November 20th). When it is her time to be born, they will schedule a c-section. She will then spend a minimum of 2 weeks in the hospital, where she will be evaluated and be cared for by an amazing team of doctors and nurses. Once she is breathing well, eating well on her own, and gaining weight we will be able to take her home! 

We truly believe that this surgery will give her a better quality of life, and are excited to get our baby girl healthy and hold her in our arms. Thank you for visiting our page, and please keep us in your thoughts and prayers.







Newest Update

Late update

Journal entry by Rheo Boerem —

I completely forgot to post an update about going home!


Rora is doing very well now. She had an 8 day hospital stay due some issues that we worked through, and the incredible nursing staff helped us through. Seriously, love those nurses! She did have some ongoing issues once we came home for about 4 or 5 days, but she is one tough cookie! As far as the symptoms we were seeing prior to surgery, they are improving. She still has muscle weakness, and isn't wanting to stand. We are working with our help me grow team and private pt to rebuild those strong muscles so that she will get back to wanting to walk with a walker hopefully within a year.
However, she does have another big surgery on her hips coming up in 6-12 months. We are doing what we can to set her up with a relatively pain-free, and mobile life. She is ready to get up to move, and I am confident that she will get there... when she wants to get there 😅 have I mentioned she is stubborn? Everything in her own time, and we are okay with that.
That is all for now. Thank you all for your continued thoughts and prayers! 
Read More of the journal titled "Late update"
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