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Team Miyares - Our daughter's journey with Spina Bifida, Boston, MA (2025)

07/24/2023

She graduated from the NICU and came home! Originally we thought it would be a couple more weeks but the doctors ended up deciding that she can come home before her next surgery (which will help with her kidney/urinary stuff). But for now, we are settling in at home and so happy she’s here ♥️♥️♥️

07/14/2023

Hey friends,

Yesterday our baby had the procedure on her brain. They ended up giving her a shunt which is the classic treatment for hydrocephalus. This is a life saving procedure so thank God she was able to have it! We will have to keep an eye on her for “shunt malfunctions” which could result in more surgeries but for now we are so thankful for the intervention!

Unfortunately after she got back from surgery doctors were noticing evidence of seizures. It was very very scary for us! They did a bunch of tests to make sure it wasn’t a brain bleed etc. They will monitor her for the next couple of days but for now they believe it was just a response to having brain surgery and not something more serious.

In addition, we spoke with the urologist and got more clarity on her urinary system. The short answer is that they need to do more tests to determine the best course of action. What we do know is that she does not have a bladder which is extremely rare - 1 in 600,000. Also that her kidneys are not great resulting in kidney disease. It’s important that she gets testing as soon as possible to avoid more damage to her kidneys. All her neuro stuff (her head and back healing) needs to be stable before they can do more testing - so praying that comes quickly!!

The urologist let us know she will be in the hospital likely another 3 weeks at least which is heartbreaking but we know it’s what is best for her.

Yesterday was a really hard day - we are thankful for your prayers and support.

G + J

07/12/2023

Hi Everyone!

Thank you all for the prayers and generosity during this very challenging time. We really appreciate being surrounded by such a loving community!

The main update for today is that our wonderful little girl will have her brain surgery tomorrow afternoon (Thursday, 7/13) to treat her hydrocephalus. She will either have an ETV-CPC procedure, or a shunt procedure. Both of these treat the same issue, just in different ways. Our neurosurgeon said that he will determine which procedure to do once in the OR where he can have a better look at her brain anatomy. There are pros/cons to both procedures but ultimately we are just praying that she gets whatever she needs with no complications or need for future surgeries.

She had her MRI Urogram this past Monday, and we are waiting to talk to the urology team to discuss her urinary system findings and a way forward.

We are hoping and praying that we will be able to head home as a family very soon but have no definite discharge date as of now.

Love,

Josh and Gina

07/08/2023

Hi everyone!

It has been a busy week - full of ups and downs. We are told to expect to be in the hospital for at least 2 more weeks. Please pray for us - we so badly want to be home!

Here is the rundown of what we learned this week:

Genetics: They did genetic testing and she came back “normal.” So at this point, they don’t believe she has any chromosomal abnormalities. The team plans to follow her in about 6 months and do more extensive genetic testing to be sure.

Neuro: They are continuing to monitor her head for pressure developing. Her head is continuing to grow so it looks like she will likely have a procedure on her brain in the next 1-2 weeks.

Urinary System: We have had to delay her urinary MRI because her labs have showed concerns about her kidney function. Right now the plan is to get her blood work done on Monday and if it looks better then they will be able to move forward with the MRI! It’s a bit unnerving because despite B*H being the best, doctors are unsure about her bladder and continue to call her a “medical mystery” at this point.

She is thriving in “normal baby” things which brings us so much joy! She’s feeding well, pooping/peeing, and making all the cute newborn noises. We love snuggling her and watching her grow everyday!

Please pray for us to have endurance in the hospital, as well as for her kidneys/bladder and her brain.

Thank you for the continued love and support!

Love,
Gina and Josh

07/01/2023

Hi everyone!

Our little princess is one week old!(technically 8 days but who’s counting?)

Here are some updates:

First of all, she was taken off all IV fluids and medications besides Tylenol, and she is taking full feedings. So she is stable!

Her kidney function remains the same since her birth. It hasn’t gotten worse, but we are praying that it improves as time goes on.

Next week she will have an MRI on her head and spine, and then another MRI on her urinary system. We would really appreciate specific prayers for these scans and their results. As her most extensive scans yet, we are anxious about the results.

Finally, Plastic surgery checked her incision and she was approved to lay on her side instead of just her stomach. Speaking of places she’s able to lay, we were finally able to hold her for the first time today!

Gina and Josh

06/27/2023

Hi everyone! Just a small update on our little girl! Her plastic surgeon came by yesterday and said she is healing perfectly and gave her a “12 out of 10” on her spine surgery site. We look forward to when she is healed enough so that she can get proper scans and get more answers about her head and urinary tract.

As we visit with her, she is wiggling her toes and occasionally opening her eyes. Even though she is sedated, she often tries to pull out her own wires and tubes. The doctors say she gets agitated and wants to be independent of all the wires. Miss Independent already! Josh says she has her mother’s personality. And the big news today is that she was able to come off the ventilator and breathe on her own!

I was discharged from the hospital yesterday and I’m continuing to heal well from my C-Section! The only downside is that we are commuting back and forth from home to the Children’s which is about a 40 minute drive. If you’ve had a C-Section before, you know how uncomfortable car rides can be! But it’s worth it to spend time with our little girl. :) We are lucky that B*H offers private NICU rooms and there is a bed in the back for me to rest and recover.

It is difficult to leave her at the end of each night. I feel overwhelming emotion from being separated from her. But, I am so grateful she is in the good hands at B*H. It will all be worth it when we can finally bring her home.

06/25/2023

Our baby girl has arrived! She was born via C-Section on June 22nd at 8:28am. There were no issues with her birth and she went smoothly to the B*H NICU as planned. (Gina is doing well recovering at a different hospital).

She has experienced a lot since her arrival! On Thursday evening, she had spine closure surgery. We are told that surgery went well with no complications! As part of her recovery, she is on a ventilator. She hasn’t been able to come off it yet so we are anxiously awaiting that!

I’m terms of her head, she is being closely monitored by the neuro team. It is quite large but they are watching to see if it continues to grow and if pressure develops. If this is the case, they will perform a procedure to drain the fluid.

The urology team is also monitoring her. While in-utero, they thought she may have bladder extrophy (bladder on the outside of her body). However, when she was born this was not the case! That being said, they still haven’t found a bladder in her body. She needs more scans to get a clearer picture of what’s going on.

Although everything is relatively stable thus far, it has been a challenging few days for us. Nothing can prepare you for your 1 day old daughter being in pain recovering from that major of a surgery. It’s so hard to be separated from her and unable to make everything okay. We wish we were adjusting to newborn life at home but we are grateful for the medical team taking care of our girl.

We would ask for prayers for both our little girl’s physical health and our navigating the emotions of this challenging process.

Thank you all!

Gina + Josh

06/19/2023

Hi Everyone!

As we get closer to our due date, we wanted to give you an update.

Last week we found our our original neurosurgeon will be on vacation for the next couple of weeks. At first this was really shocking news, but we are hoping to meet this week with the other neurosurgeon who can perform her surgeries.

We appreciate all of your prayers and support as we welcome our daughter into the world. We plan to keep the schedule of the delivery private, but we will update you as soon as we are ready.

We are grateful for you all! Thank you for supporting us.

Gina and Josh

05/03/2023

Hi Everyone!

Thanks for keeping up with our updates so far. We appreciate all the prayers and kind words for us and our little girl! We are very excited to meet her in just 6-7 weeks!

We had an ultrasound and another follow up appointment yesterday the urology team at Boston Children’s Hospital, and an appointment with the nephrologist today.

Here’s what we know for sure:
- We will deliver at Beth Israel Medical Center in Boston
- She will have a surgery on her spine within the first few days of her life to close the mylomeningecele
- She will [most likely] have another surgery on her head to help with the hydrocephalus
- She will be closely monitored and tested in the NICU by several specialists for as long as needed
- She will see a team of Spina Bifida specialists at B*H on a regular basis after she is born, in addition to typical pediatric check ups

Here’s what we know, but won’t have exact answers about until she’s born:
- She still appears to not have a normal bladder. This may be bladder exstrophy, ectopic ureters or another condition causing an apparently absent bladder. With this she will likely need other surgeries, but at an unknown time after the neurosurgeries.
- She may be treated by general surgery at some point, depending on if the bowel tract is also impacted by the urology development issues
- Her kidneys appear to be functioning normally (producing urine/amniotic fluid), but the way her kidneys function at birth and continue to function is a little unknown
- Her time in the NICU will be at least a matter of several days, but could increase to weeks or months

We are very grateful to be in such close vicinity to one of the best children’s hospitals in the world, and even more so to have so many people praying for our daughter already.

Several people have asked at this point about whether or not we have a registry, so we figured we would put the link here if anyone else is interested: https://www.babylist.com/list/regina-and-joshua

Your support and prayers are more than enough, though! Thank you for everything.

Josh and Gina

04/06/2023

4/6 Update:

Hi everyone! We have reached the third trimester!!

It’s been a few weeks since we posted because we keep hoping to have more news to share but we don’t. Over the last couple weeks we have had ultrasounds and MRI at 3 different hospitals and doctors still can’t find our girl’s bladder. We had a consult with a urologist at Boston Children’s and he said there were 6 possible diagnoses for her but none seem clear at this point. With every diagnosis, she doesn’t have the typical markers. For example, it could be bladder extrophy - where her bladder is open to the outside of the body. However, based on MRI her abdominal wall is in tact. And that is just 1 out 6 options for a diagnosis - the doctor isn't confident in any of them. We will have more scans around 30 weeks but it’s likely we won’t have answers for this until she’s born.

In terms of her hydrocephalus and spina bifida, everything is “normal.” Her ventricles continue to grow but at a rate they would expect with her condition. We have another ultrasound next week to continue to monitor growth.

Please pray for us to have peace. We continue to fluctuate between hope and fear. It has been a hard few weeks with little clarity on what is going on. But our little girl is continuing to kick in the womb and that brings us a lot of joy ♥️

03/12/2023

3/12 Update:

Hi everyone! We don’t have a huge update because appointments this week were “normal” prenatal checkups.

However, a happy update is that Josh and I worked on the nursery this week!

I learned the importance of hope during the last two years when we struggled through infertility and had a miscarriage. I was plagued with thoughts of “what ifs.” My therapist reminded me that preparing for the worst case scenario does not necessarily make it any easier when it comes. Spending months anxious over what might happen will only strip us of the joy we can feel in the in between.

Josh and I have definitely fluctuated between fearing the worst case scenario and having hope for the future. We know there will likely be challenges to come, but for now we choose to celebrate and hope for the life of our daughter.

“For this reason I remind you to fan into flame the gift of God, which is in you through the laying on of my hands, for God gave us a spirit not of fear but of power and love and self-control.” 2nd Timothy 1:6-7

We are hoping to have some sort of update next week because we have an appointment scheduled this week with the Urologist and an ultrasound to measure to ventricle growth etc. Thank you for your ongoing support for our family. ❤

Ongoing prayer requests:
- For our appointments this week with Urologist and Ultrasounds. Hoping especially for clarity about her bladder/kidneys
- Peace over the “what ifs” of the future
- Protection for our daughter in the womb and that her condition would not progress.
- Prayer against preterm labor!!!

Love,
Gina (on behalf of the fam)

Team Miyares - Our daughter's journey with Spina Bifida

07/24/2023

07/14/2023

07/12/2023

07/08/2023

07/01/2023

06/27/2023

06/25/2023

06/19/2023

05/03/2023

04/06/2023

03/12/2023

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