Journal entry by Molly Perry

It's been a bit of a crazy few weeks around here and it just got a bit crazier! 
They cancelled her 2nd stage bladder closure and pelvic osteotomy surgery because she's too small. We decided to move forward with fixing her feet and spent 4.5 weeks doing casting with the surgery to release the tendons and pin the bones scheduled for tomorrow. On March 19th she had a full brain and spine mri which showed that the spot on her Back that we've been concerned about has continued to get bigger despite the brain surgery that was done in hopes that it would go away. That left us with a what's next scenario. The original plan was to let things be and carry on with doing her feet and keep an eye on it. Then i had time to think about it more i questioned if this was the best plan knowing that her bladder surgery is about 16hrs with 2 weeks of bed rest on her back after that. I wondered if that would be good for her spine at all. And let's be serious here this mama might go crazy(er) if her bladder surgery gets cancelled again!  So I asked each surgeon on her team (aka "the fab 5") they all said "spine comes first" so I had another discussion with her Neuro surgeon Dr Warf and it was decided to stop fixing her feet right now and next Tuesday April 9th Agnes with go in for a spinal surgery to detether her spinal cord for a second time and to place a shunt in her spine that will redirect the spinal fluid so the large pocket of spinal fluid on her bum will go away.
But... this afternoon we were admitted to Boston children's hospital because she got a fun stomach bug over the weekend and has been doing what's called "dumping" which has caused her to be a bit dehydrated and her blood and urine sodium levels are "critically" low. She is getting IV fluids filled with sodium to help replace what's been lost. Praying her tummy settles and we are able to go home before her surgery next week. Poor darling I've never seen so much baby poop... Praying she turns around and is back to her spunky self again! 

We are loved and we are held in the hands of God. A sweet mama friend with a like girl with OEIS just like Agnes says "Jesus, Mary, I love you, save souls amen."

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Journal entry by Molly Perry

Life has been pretty busy lately and staying to feel like we're all settling into our new normal. The pavlik harness that Agnes was in for her hips officially didn't work which means she'll need surgery to repair them and will be in a cast for 12 weeks! Her 2nd stage bladder repair surgery and pelvic osteotomy will be in the end of March and will be an 8 week cast. Her feet. . yeah they also need surgery with pins and you guessed it... CASTS!!! My question was, can't you do all of this at the same time? Uh NO! 
But before all that, her brain. 
The last month or so the area on the lower back where her cyst was when she was born has been getting larger and larger. MRI showed that it's spinal fluid pooling in a pocket that keeps growing. This weekend we all went down to Boston, stayed at a great hotel, went to the aquarium oh and had another MRI of her brain and spine. These are called "feed and wrap" because ther want me to feed her and get her to sleep through it all. It was mostly successful..... until it wasn't and she no longer wanted to sleep. Though to her defense a 45 min MRI took 3 hours! They had 3 images left to get and it was either leave without getting them and have to try again OR.... mama goes IN the MRI machine laying down WITH Agnes! So great! But we got all the needed images. 
We met with Dr Warf her Neuro surgeon today and went over the results. Good news is that she doesn't have hydrocephalie and her ventricles aren't enlarged. BUT there is the pouch on her lower back which means that the spinal fluid is not circulating as it needs to. Dr Warf will do surgery on her brain to correct the flow of fluid. Surgery is scheduled for January 15th. 
Mid Feb ortho will begin casting her feet with plans to repair them with pins before she's 1.
It's a lot. But I know Agnes has incredible surgeons and an even more incredible God.

I was made for this apparently!  round 2 of special needs patenting. I ran into an incredible friend at the hospital a few weeks ago. Her sweet girl has SMA but is lucky enough the be receiving the only treatment to it which is absolutely incredible! We talked about way back when we meet and they were in the process of considering putting their girl in the drug trial. The decision was yes and I'm so glad it was! We talked about the number of people who tried to deter her from this trial. We also talked about the number of people who asked me if we wanted to terminate my pregnancy with Agnes and how our journey through special needs parenting with a fatal disease has changed our perspective. How my response has become "it's just spina bifida"  she has a larger complex called OEIS. Agnes is doing incredibly well. We are blessed beyond measure. 

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Journal entry by Molly Perry

It's been a while since I've written an update. A lot has happened. Agnes has her surgery and did incredibly well! She's amazing! We also CAME HOME! 7.5 weeks in Boston children's hospital... Phew. My little darlings were so strong and brave through it all. 
A few days before being discharged she was seen by the ortho surgeon who diagnosed her with hip dysplasia and dislocated hips. He put her in a pavlik harness to support them and help put then back into place. Since bring home she has been in the harness 24 hours a day. We go to Boston every Thursday to have her hips checked. Last week they determined that the harness didn't work meaning she'll need an additional surgery to fix both hips. We go back again this Thursday to see ortho and get the final determination and hopefully a plan. 
I'm hopeful that they will be able to fix them soon so she can heal and recover for her next big surgery to close and put her bladder in her abdomen. I'm getting faster at diapering her and changing her ostomy bag is getting easier. Some days its all just too much and no matter the number of surgeries she has it just will never go away. She will always have this. She's legally considered disabled. I consider her special abled. She will do great things. One of her surgeons told me just before her discharge that she is doing far more than any of them ever thought she would. They didn't think she'd be able to eat very well or even have much if any movement in her legs. She told me that Agnes' prenatal scans were "scary bad" "grim". I'm not sure how I had no idea of that, if I just never heard them telling me this, if I had my rose colored glasses on because they weren't telling me that what she has was fatal because we'd gone through a fatal diagnosis and that's just wow. That shakes you to your core. Don't get me wrong this isn't rainbows and unicorns. But it's all about perspective. It's smiling and laughing in the face of difficulty, it's pushing through,  it's "Advocating like a mother" (yes i have a shirt that says that lol). I won't lie wrapping my head around this additional surgery isn't easy. Accepting that this isn't going to ever go away has left me speechless, breathless and a bit broken.  That our darling Agnes is always going to need special medical care and that this is our new normal is a lot to take in at times. I find my emotions all over the place, perfectly fine to crying through the grocery store. But still it's so much better than what we've faced before. I'm so thankful for our faith and whatever God has in store for me in all in. We will tell of Him. 
 it's just great to be home as a family, trying to slow down and enjoy it all, trying to fill days with normalcy and things that make me feel connected to life, helping art Griffs school, field trips, chickens for Isla and laundry so much laundry! 
I'm so proud of Agnes!  She's growing slowly but surely and weighs 6.5lbs now! She received her Tiny Super Hero's cape the other day it's so tiny! If you've never heard of their organization you should check them out! 
Back to Boston super early on Thursday. 
  • Tiny Super Hero cape! 
    Tiny Super Hero cape!
  • Girl power
    Girl power

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Journal entry by Molly Perry

Its not all sunshine and unicorns around here but this incredible girl is our own personal miracle unicorn (its soooo FLUFFYYYYYY) 
Agnes seems to have shocked even the most experienced neurologist! When she was born she has what's called Chiari II Malformation (Chiari malformation is a problem in which a part of the brain at the rear of the skull bulges through a normal opening (foramen magnum) in the skull where it joins the spinal canal. This puts pressure on parts of the brain and spinal cord, and can cause mild to severe symptoms. In most cases, the problem is present at birth. In this type, 2 parts of the brain (the cerebellum and brainstem) bulge through the foramen magnum.

This problem can happen in newborns who have spina bifida or spinal myelomeningoceles. A myelomeningocele is when part of the spinal cord and backbone (spine) grow outside the body instead of inside.

A common problem with type II malformations is too much spinal fluid in the brain (hydrocephalus). The extra fluid puts more pressure on the brain. The bones of the skull expand to a larger-than-normal size.)
The ventricles in her brain were also abnormally small not containing enough cerebral spinal Fluid. 
They are getting Agnes all.tuned up.for her big surgery on Tuesday so on We she had a chest xray, head ultrasound which reported warranting a brain and spine MRI. So I took her down to MRI and WAITED 2+hours for it to be finished then I had to wait for any info. Once I was given some tidbits they didn't sound good and I was told "try not to lose any sleep tonight" RIGHT!!?!! I barely slept. The next morning I waited for her neuro surgeon to give me the findings of the MRI and THEY WERE SOOOOOO GOOD!!! The Chiari she had been born with was GONE YES GONE! The enlarged ventricles they were seeing in her brain were actually her ventricles enlarging to normal healthy size because they were abnormally small at bIrth! A true MIRACLE! Absolutely incredible! 

This week has been such a stressful rollercoaster ride! She got an infection which has been affecting her breathing causing her to show small desats in her blood oxygen levels. This has caused pretty much every department in this place to check her out... we've been seen by Neuro, urology,, cardiology, pulminary, infectious disease, plus 2 mri, 5 chest xrays and 1head ultrasound. Loads of blood tests causing her to require a blood transfusion the other day. BUT in themidst of these long difficult days I have also been blessed to have an incredible friend Lisa Mason (Blas) spoil me with having her friend Lisa come me a manicureand pedicure!it was such a relaxing treat! 
We are into surgery prep these next few days to make sure everything is as it needs to be. Agnes will be in surgery for about 7+ hours on Tuesday starting at 930am! I know she is in the best hands possible but wow its so hard and scary sending your newborn baby into major surgery for hours!
Richard and my babies are here for the long weekend and its so wonderful to see them! Its so.difficult being away from them... we've been here for 5weeks now! This time has certainly been very difficult.on us all. Its heartbreaking to me that I won't be home for the firstdayof school this week.
Please.pray for griffin and Isla that they can know I'm not away by choice and that I miss them despeately. 
We are so thankful.for.our friends and family who have come to visit, sent cards and sweetss gifts and have taken the time to call, text or email. It really all means so much and helps get through these difficult days.
Please pray for her surgery on Tuesday, the surgeons, nurses and everyone involved in surgery Tuesday and that her recovery is speedy and we can ben home very very soon!



Journal entry by Molly Perry

Waiting for surgery. Agnes' scheduled surgery for last Friday was cancelled due to low sodium and electrolyte levels making it dangerous to have anesthesia... so here we are residents of Boston Childrens Hospital, waiting for her new surgery date. Sept 4th. 
Theres been a lot happening here these last few days. Sunday night she started desating her blood oxygen levels and had to be put on low oxygen and it has continued over night since then but is perfectly fine during the days. Chest xrays have shown clear lungs so they arent quite sure whats causing this. But it makes for long sleepless nights! 
Yesterday Agnes had and passed a swallow study. Today she will be seen by cardiology and pulminary to hopefully figure out what's going on with her breathing. Prayers for this are appreciated. 
We had been teased with the possibility to going home before her surgery but now this is happening so that doesn't look like it will happen. We need her at her absolute best for this very long surgery! 
It breaks my heart that she's going through all of this and still has so much more to go. 
Living at a hospital is interesting. Not something I ever wanted to do... nor did I ever want to be a nurse or know so much medical lingo and info, one of the drs just asked me if I was in the medical field for work because I knew so much! God had other plans for me though and he really wanted Richard and I to be special needs parents! 
The support staff here is truly phenominal. They came and did some really sweet newborn pics of Agnes and did her footprints to make a super sweet sign for her/me! They also granted her "Little wishes" which gave her 150$ to pick out somethings she would like from Amazon and her order should be here any day now!
We did our laundry here yesterday and have made friends with the barista at the in hospital Starbucks! I feel bad for the drs and nurses that come in to see us... its easy to get chatting because I don't have adult company all day lol!
Agnes is finally gaining weight which has been a lot of work to do!
I love when richard and the bigs come visit on the weekends, but I feel bad for them because there really isn't much for them to do here.
So here we are 12 days to surgery number 2 and 12 days until the first day of school for the bigs! I'm so sad that I will have to miss getting them off on the first day, I hope one day they will understand. I also hope they don't hold anything against Agnes.

Please continue to pray for our miracle girl who is already doing way more than the drs expected her to! 

Journal entry by Molly Perry

Richard and the bigs were here for the weekend and it was so wonderful! My heart aches for them.  
Agnes was moved from the NICU to "the floor" today which shows how incredibly great she's doing! It also means she un hooked from ask the machines and I'm free to stroll around with her. I took her outside on the rooftop garden and it was so lovely to get fresh air and sunshine! It also means I get to sleep in the same room as my precious girl! (Mmmm but we're also sharing a room with someone else... boo) 
Agnes and I won't be spending much time in this room! 
I went out for a walk tonight too pick up a new charger for my phone, and I picked some beautiful flowers to brighten up my room. 
This is all very emotionally, physically, mentally tolling but we are fully trusting in and relying on God to get us through this. We'll be stronger as a family in the end. 
Wee know that things could absolutely be much worse and it only takes a moment to look around a busy children's hospital to realize that. And another good reminder of that is today is August 5th and we lost our sweet Payton 6 years ago today. There isn't a day that goes by that we don't long for her and miss her deeply. 
 So while I sit here nursing my littlest love, I soak in all the blessings. I may be pretty uncomfortable in many ways but it's only temporary. "I will praise him in this storm"

Next surgery is August 17th!

Journal entry by Molly Perry

Miss Agnes Ushi Perry (it's official, I FINALLY filed out her birth certificate)  Ushi means strong as an ox in Chinese. 
Agnes is braver and stronger than her mama and I couldn't be more proud to call her mine! 
She had her back closure surgery yesterday and it turned out to be a really long day. Her surgery was planned to be 3-4 hours... it took 6+ hours because her cyst and the reconstruction of her skin on her back turned out to be more complex. Her surgeon is so lovely and we are so grateful for him. Hee said he does what he does because God allows him to. 
Richard came down yesterday with Griff and isla which was so good for this aching mamas heart. It's painful to be a mama seperate from her babies and incredible husband. 
Anyway, her surgery went incredibly well, Dr Warf didn't see any nerve damage in her legs and feet! Praising God! She is still intubated to help her breath, rest and come off the anesthesia. Her blood pressure and pain management were really great over night and they were able to take one of her IV lines out! Her sweet little face is swollen from the surgery so she looks a little different. She list a lot of weight from the removal and now weighs only 4lb 8oz. But she's a premie. The Drs are impressed with her strength. She's quite amazing! 
I can't wait to hold her when she's healed. 
Het next surgery will be for her bladder on August 17th. 

Thank you so much for your prayers, support, love, thoughtful words and encouragement. 

  • Griff and Isla got to visit her this morning before heading home. 
    Griff and Isla got to visit her this morning before heading home.

Journal entry by Molly Perry

She decided to come early..... 4.5weeks early! Our beautiful girl Agnes was born on Saturday July 28th at 4pm via c-section in Boston. She weighed 5lb 9oz and was 16"long. My water broke early early morning on Saturday and we called the dr and left for Boston by 830 that morning! 
 Her spina bifida is a large cyst low on her back at the L5 level of her spine (which is significantly lower than originally thought. YAY for good news!!) Her bladder is on the outside as well as a portion of her intestine. There are no problems with her brain which is so awesome as well! She is having her first surgery tomorrow (Tuesday July 31) at 1130am. This surgery will be to repair and close the cyst on her back. The surgeon called me tonight to discuss the surgery with me. Please be praying for all hands involved tomorrow, that anistethia goes well, no nerve damage is done in surgery and she can be extubated right away. 
After she recovers and heals some from this surgery she will have a surgery to repair her bladder and place her intestine in where it belongs. The bladder repairs are multiple surgeries done over time. 
The drs and nurses are impressed with how strong and healthy she is. She is also very feisty! She loves her yaya (pacifier) but has also found her thumb, insisting on sucking the one taped up with her IV. 😂
I'm not yet able to breastfeed her because of her exposed bladder and bowel, so she is on IV nutrition and will be until her bladder surgery.
I was able to hold her on her little mattress, but haven't held her body yet because of the cyst. I can't wait to hold my girl!

The c-section went well and I'm feeling great, up and walking ect. I had an allergic reaction to the adhesive bandaging used for my incision which left painful red marks on my stomach and is the only pain I'm experiencing. 

Griffin and Isla can't wait to meet their new sister and I look forward to seeing them and Richard this weekend! its really hard being away from my husband and children, but we will get through this. 

I'll update on her surgery tomorrow night! Thank you all so much for your prayers, love and support!

PS the donation thing that shows up at the very bottom is to donate to CARING BRIDGE to run their website not to us.

Journal entry by Molly Perry

I went back to Boston children's hospital last Thursday to have an ultrasound and appointment with one of the surgeons who will be caring for Agnes. She was being stubborn during the ultrasound and wouldn't roll over don they could see the front of her (are we surprised? ) so they didn't get all the images they were hoping for but what they saw was fine. No changes (good or bad) so that was good news. 
We just got the date for her arrival via c-section  on Aug 13th! 
They expect that she'll be in the hospital for about 2 months. Her first surgery with be within 24-48hrs after she's born. 
The form of spina bifida that she has is very rare, but she also has the bladder exstrophy which makes both a bit more complicated. 

My heart aches thinking about being away from my children, husband, family, friends and home. I won't lie, I'm struggling with all of this. We continue to pray for her and pray that things look a while lot better when she's born.  "He's not finished yet"

We've had lots of offers to help and we are so grateful! My dear friend Dustan Larsen is helping with all of this. Her email address is

Journal entry by Molly Perry

It's familiar, these feelings of the unknown. Not knowing what the outcome will be for our girl. I am thankful though that this time it's fixable. Perspective. 

Even with perspective I still find myself kicking and screaming into the weeks  that i have to go to Boston. The grandeur of her malformations  and the she will undergo, takes my breath away. But it can be fixed. Some days are better than others. I'm trying to keep busy helping at Griffs school, sewing, doing random things. Camping seems to be a wonderful escape for me and time to be together as a family, so we have lots of trips planned. 
I worry myself with the craziest things like, "does a baby who is given narcotic pain meds like morphine and opioids have a higher risk of becoming a drug addict later in life?"  

My dear friend shared this devotional with me. 
"Oh, Father. The dread of what is upcoming is overwhelming my thoughts and spilling over into my attitudes. My fears are holding back your power in my own heart! I want to move out of your way and allow you to go before me. I want to replace the dread with expectation of all I know you can do in this place and time. Help me watch for you, to expect you, to know you are at work, even if I don’t see it. I place my hand in yours, knowing that resisting you is exactly what my enemy desires. Help me stand firm against him by choosing you. "

I've decided to stay right at the hospital for the length of her stay... 5 blocks away is far too far away for this mama. And hey I'll get 3 meals of hospital food a day! 

I pray for this child fervently. So many people are praying for our girl. When I pray in a sad worried kind of way, the still strong voice whispers to me "hang on, I'm not finished yet" in a gentle loving way. They way a mother would respond to their child who is asking for something, maybe over and over. The mother responds "hang on, im not finished yet" His work in forming her isn't done yet.
"for this child we have prayed, for She is fearfully and wonderfully made" 

I attached a photo of her MRI showing the large cyst of cerebral spinal fluid on her back and her bladder exstrophy. 

Journal entry by Molly Perry

On April 4th Richard and I went in for our routine 20wk ultrasound. What they saw was so unexpected. Our little babe was thought to have Spina Bifida. They also were unable to see the bladder and only 1 kidney. We were heartbroken. On our drive home we called out pastor for support and the prayers began.
The next morning I went to have an Amniocentesis to see if there was a disease or syndrome causing these abnormalities (I received the results on May 4th showing no disease or syndromes). The following week I had an MRI at Maine Med. The results showed Spina Bifida but the good part is that there is no extra fluid on the brain something called hydrocephalus and is common with SB and requires shunting to relieve the pressure on the brain. SHE does have a bladder but its on the outside of her body an abnormality called Bladder Exstrophy. Both are rare.

On May 2nd we had our first trip down to Boston Children's Hospital where I had an MRI, Eco-cardiogram on baby and a lengthy high detail ultrasound. During the ultrasound they were able to see that she does have BOTH kidneys (WOW Praise God). 
We met with a specialist Dr. Borer who does MANY Bladder Exstrophy repairs (yes good news it can be repaired) Dr. Borer is a world renowned surgeon and is highly sought after. We are very lucky to have our little girl in his hands. 
Some of the other testing showed that the fluid filled sack coming off her spine is closed (not leaking spinal fluid into the amniotic fluid) also a better piece of news. They were also able to see the the spinal cord nerves are not exposed which likely means less nerve damage will be caused. There are a lot of unknowns until she is born but this is what we know now.
She will need to be born via c-section at Brigham and Womens Hospital and will be taken right away to Boston Children's where the team or neuro, general and urology surgeons will observe her and decide 
where to start.
She will need many surgeries to repair the cyst of spinal fluid and close her spine, close and reconstruct her bladder, place her bladder in her abdomen, and reconstruct her genitals. 
On May 30th I have a full day of appointments to meet with the Neuro surgeon Dr. Warf, the general surgeon, NICU Dr, and the special care OB who will deliver her at B&W Hospital. I will also have another ultrasound.
I will have more information and updates then!

We are so thankful for the prayers, meals and incredible support we have received. 
We are so hopeful for her healing and that each time the picture looks better and better. 
PS her name is Agnes 😍 
Molly & Richard’s Story

Site created on May 6, 2018

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