130
130
4

The MerTwins Story

$11,411 of $55,000 goal

Raised by 120 people in 7 months

Many of our friends and family have asked if we had or would be starting a GoFundMe for our family situation. We have had such a great support system of love and prayers, and we are so extremely thankful.  We truly appreciate all of the prayers that have been said for our family and the girls’ health and we praise God for all the answered prayers so far!

In addition to prayers, we often get asked ‘How can I help’, ‘What can I do’, ‘What do you need’?   Well, here it is.  We are starting to realize how extensive and ongoing their care is and will continue to be. In addition to being away from home for so long, we have faced more travel, food, and medical expenses than we had anticipated. 

Please donate if you can. Any little bit helps and it would be very appreciated. 

God Bless!

31814650_1533180400424019_r.jpeg


Read the full story below:

The story begins in July of 2015.  Andre and Angi met in a little sushi restaurant on July 4th and needless to say, there were FIREWORKS!!  For the next three weeks they were inseparable.  (This will prove rather symbolic later on) They spent every spare moment together for the next three weeks until Angi returned to Tennessee.  She didn’t stay long before she had the Uhaul and her two kids loaded up, headed back to Florida to begin another fresh start in her home state.

Over the next few months, their love blossomed, and the couple decided to make it official.  They couldn’t wait to spend the rest of their lives joined together as a family.  The two declared their dedication to eachother in the presence of close friends and family, in the backyard of their first home.

Shortly after, they faced their first of many tests of their love in the manifestation of financial instability.  Working together to overcome the mountain, they relied on their faith to get them through this trial and God blessed them.  After just over a year of wedded bliss, they were both at stable and rewarding jobs.  Happily a family of four, they started to talk about a baby.

Andre had always wanted kids and he was thrilled that Angi brought two very loved children into the marriage, but they wanted to have one more together to complete the puzzle.  They started planning with doctor appointments, temperature checks, charting, and timing things just right.  Then Hurricane Irma hit, and GUESS WHAT?  HURRICANE BABY!!

They were overjoyed that their journey would start so soon!!  They went to the doctor when Angi was just over 8 weeks pregnant.  An ultrasound was used to confirm the pregnancy.  Even after having two kids in the house, Andre was looking forward to experiencing a baby from the very beginning and joined Angi for the first appointment (and many more).  They were sitting in the room all set up for the examination, anxiously anticipating seeing their little peanut. The ultrasound tech got started.  She was going around and around Angi’s belly, looking from all different angles, scanning back and forth and back again. Then Andre and Angi look at each other in surprise ... 

31814650_1533180471101831_r.jpeg

TWINS!  There were TWO babies!!  Angi was a little in shock and Andre was over the moon excited!  After the initial speechlessness wore off, the doctor came in and voiced his initial concerns. This is where their journey changed directions in the blink of an eye.

The doctor had suspicions their little blessings were conjoined at the abdomen. They didn’t even know what to think, and were both terrified.  He discussed all of the options, risks, statistics, and elective termination.  The faithful couple said NO, that was not an option.  God has chosen them to take care of these special little souls and termination was absolutely out of the question.  They were very blessed with a fantastic doctor who 100% supported their decision, and was ready to walk with them through this unique journey.

Within the week, they were referred to a Maternal Fetal Medicine (MFM) Specialist.  As much as they loved their doctor, they were hoping he was wrong, that the tech was missing something, the scan was of poor quality, the technology just wasn’t advanced enough to give a good picture of the babies. However, this doctor saw the same thing; he concluded the same diagnosis.


This was hard.


They had so many questions swirling around in their heads.  How are they going to care for these sweet babies?  How do they feed them, find them clothes, get them home safe from the hospital?  How will they be okay?  It was a very hard day for them, but Andre was such a faithful and positive leader of his family. He knew God would get them through this and would take care of His babies. 

A few weeks went by and they had another appointment at the MFM office to have another scan. The babies would be bigger then so they could confirm shared organs and plan the next steps.  At this point, they were still in denial. They just knew they would experience a great miracle, the babies would be completely separate, the doctors were wrong, and to God be the glory!!

But they learned something that day. Their babies WERE miracles and they received the best news they could have ever dreamed of.  Yes, their babies were conjoined and sharing a liver and intestines.  But this was a great blessing. The babies could be separated, and live their lives virtually unaffected by this minor detail from their great beginning.  And these babies are so special that God choose them for this unique journey and Andre and Angi to be responsible for their care while on this earth. What great trust God must have in them! 

Conjoined twins are so rare, Andre and Angi really weren’t familiar with the condition so they started researching.  And researching and researching.  They discovered just how rare they really are.  Let’s review a few things they learned.  Conjoined twins occur one in every 200,000 pregnancies.  Of those pregnancies, only about 40-60 percent survive to birth and only 35% live past their first day of life.  Their girls were one in 5 percent of conjoined twins that make it and are healthy enough for separation surgery.  After realizing the odds they were facing, the next step was to have some testing to make sure the babies were genetically strong enough to survive the pregnancy. This was a huge hurdle. This was the greatest and most important test they could take and the babies passed with flying colors!  Praise God! 

Over the next few months, they attended many appointments with fetal specialists,  pediatric surgeons, hospital tours, and finally ended up at Shands Children’s Hospital in Gainesville - over 100 miles from home.  There isn’t many places that can say they ‘specialize’ in conjoined twins but Shands has had quite a bit of experience in this area over the past few years.  They were confident this was where God had led them to seek the proper care for their precious girls.  They met with the doctors and came up with a plan to deliver the girls at Shands.  Shortly after birth, they would be able to have all the necessary testing in order to prepare for the separation surgery.

Fast forward to Mother’s Day this year and the girls decided it was almost time to make their grand appearance.  With contractions starting and being two hours away from the specialists that knew their little miracles, they grabbed their bags, got in the car, and headed North.  Fortunately, they were just two days shy of the big planned delivery so they were able to stall the progress and keep the girls from making their grand entrance until the rest of the team was ready.

May 15th, 2018 – their lives changed forever.  Remi Lee Christina and Jesi Robyn Andrea joined their world.  These beautiful babies were born at 9:55am and their parents melted at the sound of their cries.  Mom and Dad got to see their beautiful faces before they were whisked away to the NICU to get settled.  While mom was recovering, dad made a visit to see the girls in their new temporary home.  Unfortunately, it has become a lot less temporary than expected.  Eleven weeks later and Gainesville continues to be ‘home for now’. 

31814650_1533180756111331_r.jpeg

When their journey was first beginning, they were expecting to stay in the hospital for about a month to make sure all the girls’ parts were working as they should.  Once the doctors were satisfied, they would continue growing and getting stronger at home, then return for surgery around three months old.  As the first month was coming to a close, it was obvious the girls would remain in the hospital, patiently waiting for their separation.  With all the preparation procedures and the complications that came along with them, surrounded by nurses and doctors was the safest place to be until their BIG surgery.

31814650_1533181162709127_r.jpeg

Their big day came on July 23rd, 2018 at 8am.  Andre and Angi got to the hospital around 6 am to spend some time with the girls before they were taken down to the surgical floor.  That morning was one of the hardest yet.  Sending your precious little 10 week old babies off to have a major surgery that is so uncommon that the doctors cannot solidify what the outcome or recovery will look like until it is over is heartbreaking.  And the wait!  Waiting for the surgery to start, waiting for the first update, waiting for the final word that one has become two.  Even though they were surrounded by loved ones, being preoccupied with activities and conversation, the wait was long.  

31814650_1533181725727218_r.jpeg

Then, they got the call.  They had TWO HEALTHY BABIES!  What a relief it was to know the surgery was going well and they were able to successfully separate the liver and the intestines for each girl.  The next step was the closing of the incisions.  This was the tricky part and even though the girls had went through weeks of uncomfortable skin expansions, which caused many issues in itself, there was too much swelling and not enough skin to cover their wounds.   This meant the girls would require a second surgery once the swelling went down.  This would mean Andre and Angi would have to send their girls back to the operating room once again the following week. 

31814650_1533181331884518_r.jpeg

And this is where they are now, waiting again.  Waiting to hopefully have another successful surgery, but not knowing the conclusive outcome.  The surgeons are hoping the wounds can be closed using the skin the girls worked so hard to grow.  If not, there is a plan B, and C, and D.  But they are optimistic they will be able to close.  Andre and Angi are praying they will finally get to hold their little bundles of joy and hopefully bring them home soon. 

31814650_1533181682662096_r.jpeg

Over the last year, these parents had done their best to plan and prepare and set financial goals to address their needs while meeting the needs of their growing family, but there were many factors they didn’t account for.  They knew they needed more room in their house, but with two special needs babies, they also knew remodeling was unrealistic.  They ended up putting their house on the market and buying a bigger, and more expensive, house down the street.  They knew they would need a new car as their tiny compact would not fit their new sized family so they planned on buying a mini van.  However, they didn’t plan on their second car, and Andre’s main means of transportation for work, to fail right in the middle of all these other things going on.  They planned to meet their deductible this year but not for all the unexpected medical, travel, and food expenses while waiting for the babies to grow.  They planned on one big surgery for the girls but didn’t expect there to be a pre-surgery surgery and a post-surgery surgery (or several). They knew their girls would need special care but they didn’t plan on how extensive that care would be or how long it will last.  The fact is, this family will have a long road ahead with future surgeries over the next several years. 

31814650_1533183389578323_r.jpeg31814650_1533183415169636_r.jpeg

Again, thank you for all the prayers!  God Bless!!
+ Read More
In order to spread the news of our precious MerTwins further, Ride to Give is leading a fundraiser for us! Please see the link to the story below:

Ride to Give is a 501c3 non-profit charity that turns athletic ability into fundraising power for families with children who are disabled, injured, or ill. They are currently raising funds in support of Remi and Jesi at the link below and your donations are tax deductible. You may learn more about Ride to Give at their Facebook page or at www.RidetoGive.org
+ Read More
This story sounds quite familiar. Even though we haven’t made it ‘years’ yet, Andre and I have accepted this could be our reality over the next several years. Having a medical dependent child is hard. Having two multiplies the challenges. We have twice the medical expenses, twice the weekly therapy appointments, twice the monthly pediatrician appointments and multiple specialty appointments, twice the medical equipment orders and deliveries, twice the co-pays, deductibles, co-insurance, and other miscellaneous medical bills. As we face a new medical plan year, all deductibles, co-pays, co-insurances, and out of pocket maximums start over. In addition, we have twice the general daily care expenses. Our babies cannot go to a regular daycare, packing and loading them into the car each day and transporting them to a medical daycare is unrealistic on a long-term basis (besides the astronomical daily fee for such types of daycare), and an in-home nurse…. that too is not something our current financial state can fairly support.

But we are twice as blessed. We get twice the smiley grins, twice the snuggles, twice the laughter, twice the opportunities to experience the ‘firsts’ as they grow, twice the quiet moments and twice the love from our precious MerTwins.

Over the last several weeks, we have had to make some truly difficult financial decisions. In order to provide the necessary care for special girls, there will be drastic, unavoidable changes in our family’s dynamics. With or without these changes, our financial outlook is grim. But I know God will provide where we fall short. He has held these girls in His mighty arms throughout this journey. He has had His plan all worked out for us, even before Andre and I met. He has blessed our family in ways that cannot be counted in dollars and cents. We will make ANY sacrifice to make sure our family is taken care of and our children’s needs are met, all four of them. It has been a long road, but our story isn’t over yet! God has big plans for these girls. My only prayer for them is that they serve God’s purpose for their time on this earth. If we help just one family by sharing our story, giving one family hope where there is only despair, I know God will be glorified.

As always, we thank you for your prayers and support. And as always, we ask for ongoing prayers and the sharing of our GoFundMe page. Prayers for continued good health for the girls, and that their path of healing continues with minimal obstacles, prayers for our family to trust where God leads us on this unique journey, prayers for financial well being and for God to make ends meet where it seems impossible, prayers for our older two children as this is not easy on them either, to love these little babies that fight so hard each day just to be babies, and prayers for those families that need to hear a positive outcome of a despairing diagnosis. Our girls are truly the work of God and are undoubtedly miracles babies.

Love to all and God Bless!

https://www.lovewhatmatters.com/the-billing-department-doesnt-care-if-your-baby-died-the-medical-companies-dont-care-if-youre-on-unpaid-leave-because-your-child-is-a-long-term-patient-you-still-have-to/?fbclid=IwAR3hF9pOYVTNErwisRy1ID_mdal2342bGR3Ek5R4jecs7ZSp1KymIlgZE54
+ Read More
December 22nd, 2018

#LifeinthePICUday17

Yes, you read that right. And if you’ve been following our journey, you may have noticed a little social media silence from us since Jesi graduated from the NICU on December 3rd. The last 18 days have been a condensed roller coaster of emotions that we had experienced during our entire stay in the NICU. There were times of celebration and excitement and there were times I was on my knees praying we would continue as a family of six. It was quite terrifying, to say the least.

It all started on our drive down from Gainesville. On Wednesday, December 5th, Big brother had his National Elementary Honor Society induction. I was so proud of my baby boy and excited that I would be able to make the drive to attend this special recognition. When we were about 30 minutes from arriving home, Jesi started struggling. She desat’d down to about the upper 70’s. We pulled over, turned up her O2, and got her out of the car seat. She was sweating pretty bad, which is a sign that her little body is too working hard. After letting her settle down for about 30 minutes, we decided to continue home. That night, we got Jesi settled. She was exhausted and I just held her all night long while she slept.

The next day, the girls had their first pediatrician appointment. About 15 minutes before we had to leave, Jesi had another episode. This time was worse. I just had this sinking feeling that when we got to the pediatrician, he would take one look at her and send us to the hospital.

Once we got there, the nurse got us to the room pretty quickly. I don’t even think I finished filling out their paperwork. After I told him what had happened and he evaluated her, Dr C ordered a chest X-ray. Thankfully the office has on-site imaging and we were able to get the X-ray right then and there. In just a few minutes, my worst fear we’re realized. Dr C was admitting Jesi to the hospital.

Before I knew it, I was holding onto Jesi while sitting on a stretcher and being loaded into the back of an ambulance. I kissed Remi goodbye as I know it will be a while before I see her again. Thank goodness for Nana.

Andre is with me as we speed down the interstate with lights blazing and sirens wailing.

We get to the hospital and they start the process to stabilize her - IV (attempts), blood work, viral panel, and CPAP to help her breath. Once a room is available upstairs, we were relocated to our new ‘4 walls’.

The next day, they call in the IV team to place an IV since Jesi has difficult veins and they couldn’t get one going down in the ER the previous night. Shortly after the IV was successfully placed, Jesi crashed.
Jesi crashed hard.

They turned up her CPAP to 15 liters of pressure while pumping in 100% oxygen and she still would not maintain her oxygen saturation. They had to bag her to get the oxygen into her blood. They rushed her to ICU while continuing to bag her as we followed along side the hospital crib. Once in ICU, she was intubated... again. Watching as your baby girl lies motionless while doctors are trying to get a life-saving tube the size of a straw into her little throat is true agony. I don’t wish that memory on any parent. There is nothing I could do except pray to God that He allows me to keep borrowing this precious little soul just a while longer.

After what seems like forever, they get her intubated and stable again. She was kept pretty sedated while she recovered over the next few days. They ran all the viral panels again as well as additional blood cultures. Since the IV that was placed just that morning failed while all of this was happening, they decided to put in a central line in order to have dependable access for her necessary medications. And then Jesi slept, she slept for days while her little body figured out how to breath again.

As the days went on, test after test came back negative. Classic Jesi. Through all of this chaos, we still have no root cause explaining why she struggled so hard. We have no idea how to prevent another episode from occurring. This scares me. At any time, Jesi could struggle and it could get bad quickly. Had we not been at the hospital when she crashed, well, I really don’t want to think about that. I just praise God for us being in the right place for Jesi to get the help she needed.

In the last week and a half, we have brainstormed what respiratory support would be the right fit for long term care for Jesi. Obviously what we thought would support her through until she grows stronger didn’t work. Over time, without the proper support, Jesi gets tired of breathing. She needs something more than just oxygen to keep her lungs open and working well. After she was extubated, she was put back on a high flow cannula. Unfortunately, this is not a viable option to get us home. This type of support is too strong for everyday use. The pulmonologist decided to get creative and try the BiPAP machine. It’s similar to CPAP but it lets Jesi do some of the work to exercise her lungs. She was put in this machine but unfortunately after an hour, she struggled. So we went back to high flow. The next day, the pulmonologist came back and we tried some different settings on the same machine. He wanted her on it for an hour and he would come back to check on her. To my surprise, she maintained her O2 saturation and seemed comfortable. Her work of breathing wasn’t increasing as it was the day before and it looked like this might be a good match. This was awesome news! We got the home equipment ordered, delivered, and set up for a test run while in the hospital. She did really well and the next day, we got the best Christmas present I could have ever asked for!!! We were going home! Two days before Christmas, we got to bring our baby girl home again!

As you can imagine, it has been a trying time for our family. We appreciate all your prayers and your continued support. I hope all of our family and friends have a great Christmas!
Thank you God for giving the world your son so that we can live through Him. Thank you God for allowing us to care for your precious babies! We are so blessed!

Merry Christmas!
#Heisthereasonfortheseason
+ Read More
Happy 6 month Birthday to our MerTwins!
‍♀️ ‍♀️

I can’t believe it has been 6 months since our lives changed forever! I can’t believe we have been living our new temporary normal for 6 months! I really thought we would be home by now!!

We are still not home. Jesi is still in the NICU. She is struggling quite a bit with her breathing right now. Doctors are saying it is due to the rhinovirus and should be getting better soon. Her respiratory support has increased pretty drastically over the last two weeks. She went from 200ml on a nasal cannula to 6 liters on a high flow. Even though doctors say this is not necessarily a step back, it sure feels like a defeat from where we were two weeks ago. Please continue praying for our Jesi. She is so strong and such a fierce fighter. She just needs a break. We want her home. We want her and Remi to be back together. They haven’t seen each other since last Monday. Almost two weeks apart! They have never been apart for more than a day. We FaceTime with them and they both reach out to the phone to touch each other. It is so heartwarming to see their bond developing even this early. ❤️❤️

Next week when Jesi is fully recovered from her cold, she will undergo a swallow test to determine if she is able to protect her airway while eating and not aspirate her feed. If she can, this will be great as we will be able to transition her back to NG feeds instead of NJ. She can go home on NG. If she doesn’t pass her test, this could mean she may be in the hospital for quite a bit longer and we will be looking into a transfer to Orlando. Please pray for this situation as it will be very stressful on her.

We also have gotten pulmonology involved in her care team finally (we have been asking for months!). We are hoping they can provide some additional insight and options for long term care. We know it is highly likely she will go home on oxygen but we need to determine her actual need. They will be running a test next week to evaluate her actual oxygen level requirement.

If it sounds like there’s a lot going on right now, you’re right. There is! It’s even more stressful now as we can’t bring Remi to the hospital so Mom Pitre and I are taking turns with watching Remi while I head to the hospital to visit with Jesi. But this means less time spent at the hospital as Remi still needs me too and she still has so many appointments throughout the week.

And we need prayers there too. Remi has been struggling to keep her feeds down. Over the last couple weeks after she eats, she gags (mostly on her own fingers due to teething), and then she throws up which seems like her entire feed! We have tried everything to prevent her episodes but sometimes, there’s no stopping it. Before this started, her doctor had mentioned her weight gain trend, or lack there of. She was not even on the regular growth chart scope and was literally on the bottom line of the pre-term scope. As you can imagine, this has been very scary to know every calorie counts but your baby continues to reject these precious calories. I know that if she doesn’t start gaining weight soon, she will be hospitalized for failure to thrive. Praise report today - in spite of all the spit ups, Remi has gained ONE pound since her appt 3 weeks ago! This is a huge gain and the most she has gained since being discharged from the hospital!! I’m hoping this trend continues and she catches up to her sis (Jesi is two pounds heavier!)

Please pray for strength for me. It’s been a long journey and I just want to be home with my whole family and get started on our new normal - whatever that looks like. I miss my home, I miss my day in and day out family life, I miss my church, I miss my job, I miss my neighbors, I miss my kitty!

Love to all and God Bless!

https://www.gofundme.com/the-mertwins-story?sharetype=teams&member=536570&pc=ot_co_dashboard_a&rcid=0a5ec1ec63e146ddb34623a55e334753
+ Read More
Read a Previous Update

$11,411 of $55,000 goal

Raised by 120 people in 7 months
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
GW
$50
Gayla Warren
5 days ago
$5
Katie Loesch-Meyer
1 month ago
KB
$25
Kevin Bressman
1 month ago
JP
$50
Julia Pellegrin
2 months ago
RK
$10
Rob Kinsey
2 months ago
JJ
$100
JoAnn Jameston
2 months ago
$20
Anonymous
2 months ago
MH
$20
Mike Helford
2 months ago
$100
Anonymous
2 months ago
JH
$20
Jhansi Huval
2 months ago
or
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.