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Baby Juliette Jean's Fund

$16,900raised of $17,000 goal
99%

Organizer: Lauren Sessa Beneficiary: Juliette Jean Gerbino

This fundraiser has been set up with love to provide kind supporters with a simple way to help ease the financial burdens that will be faced as baby Juliette continues her intensive care in the NICU.

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Fundraiser Details

Melissa and Ross found out that they were expecting on Christmas Eve 2012.  As any new parents-to-be would feel, they were overjoyed.  Taking every precaution possible, Melissa ventured into her pregnancy with careful consideration so that she could ensure the best chance to deliver a healthy baby nine months later.

At a routine doctor appointment, it was discovered that the umbilical cord was wrapped twice around baby Juliette's neck.  At the same time, Melissa was experiencing pre eclampsia, a life threatening condition that occurs in approximately 5%-8% of pregnant women in the US. Reality came crashing down on Melissa and Ross in an instant - baby Juliette would need to be delivered immediately or both momma and baby would die.

Born on 5/22 via C-section, baby Juliette Jean Gerbino came into this world in a flash, 14 weeks early and weighing a mere 1.6 pounds.  The next 72 hours would be critical.  As her parents watched on in horror and shock, baby Juliette pushed through the next few days breathing with the support of a ventilator.  

In the next month, Juliette will be moved to an out of state hospital where she will undergo surgery to install a shunt in her brain.  She is developing hydrocephalus, a condition in which the cerebrospinal fluid accumulates in the brain cavity and has no means to drain.  This causes severe pressure in the brain and left untreated, can be fatal.  The shunt will help Juliette's brain to effectively drain excess fluid into her abdominal cavity where the body will reabsorb it.  

Medical insurance covers a only a portion of the costs associated with Juliette's post natal care.  Not to mention the cost of travel, gas, meals and lodging so that Melissa and Ross can be with their little girl every step of the way.  Juliette will be in the NICU for at least 3 months before she is healthy enough to continue ongoing care at home.  I am starting this fundraiser as a means to assist my best friend and her husband in paying the overwhelming medical bills that are compounding day after day.

Many people do not think about what having a "healthy" baby really means.  There was no warning, not an inkling of a thought that something like this would happen.  I am begging you to please donate whatever you can to help the plight of sweet baby Juliette, who never asked to be born into this world in such haste only to face a daily struggle that many of us cannot even fathom in our lifetime. Every DOLLAR adds up.  If you cannot donate, please share this fundraiser or at the very least PRAY.  Pray that Juliette will come out of this beating the worst of odds and grow up to be a happy and healthy little girl.

And to baby Juliette, keep on fighting little girl, show us how big your brave is!!

Thank you
Lauren
xoxo


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Updates

Updates

12/17/2013
by Lauren Sessa
Wow, it's been a while!

Juliette is home and thriving. She's 11.5 pounds and 22.25 inches long. She has physical and occupational therapy once a week, and therapists are impressed with her progress. She is just about on track for her adjusted age, 3 months.

 Juliette is also working with feeding therapists , and I'm happy to report she only uses her gtube at night! We are slowly working  to eliminate the gtube use entirely. Hooray!

Juliette's first Christmas is sure to be a Merry one!

xoxo




10/05/2013
by Lauren Sessa
It's been a crazy couple of days, so I am just getting to post this now...

After 134 days in the NICU, Juliette was FINALLY welcomed home on Thursday, October 3rd. 


Juliette is doing so well at home so far, and Mommy and Daddy are over the moon! 

Thank you all so much for your continued love, support, and positive thinking throughout this time.  It has meant the world to Melissa, Ross, and the little warrior Juliette Jean!




10/01/2013
by Lauren Sessa
Happy October!

Day 132 for Juliette today.  We are happy to report she's been breathing COMPLETELY on her own since Sunday night.  Wait until you see her beautiful face without all that extra "stuff."

It looks like Juliette will need to be fed over an hour via a pump, instead of 25 minute gravity feeds.  Its seems that's what Juliette needs right now to keep her sugars regulated.  There will be out patient followup with endocrinologists to determine when gravity feeds can start again.

There are rumors going around that Juliette may be home by this weekend...stay tuned!




09/27/2013
by Lauren Sessa
Hi everyone!

Juliette is 4 weeks adjusted today, and 7 pounds 8 ounces!

The breathing tube is finally tube out.  There was an attempt to extubate on Monday, but she had an enflamed airway and needed to be on steroids for a few days.  But now she is doing great! Doctors are slowly weaning oxygen and Juliette may be able to come home on room air.

The last piece of the puzzle is to take care of what's called dumping protocol.  Because Juliette's stomach was manipulated with her nissen, we have to be sure that Juliette doesn't "dump" her food too quickly, which would cause her sugars to drop too low.  This protocol takes 3 days.  As of now, the breastmilk goes right into Juliette's g-tube by gravity, and takes about 25 minutes.  If it's determined her blood sugars get too low, there needs to be an adjustment in the length of each feeding, which shouldn't be too difficult.

We are almost there...Needless to say Mommy and Daddy can't wait to bring their baby girl home!




09/22/2013
by Lauren Sessa

Juliette is 4 months old today!

Surgery went well. Our little fighter is tolerating her feeds through the g-tube, which is great.  She's still in a little pain, so doctors are keeping her on the breathing tube to manage for a few more days.  She is also on some pain medication, which makes Juliette a little groggy.  Since she's still on IV fluids and not moving around too much, she's very swollen.  Everything should get better in the next few days.

Doctors said that once the recovery process is over, all that's left is to figure out if Juliette needs to come home on oxygen and/or monitors.  Mommy and Daddy just want their baby girl home...Whatever it takes!

Thanks for all your prayers... let's keep them coming during the final stretch!








09/16/2013
by Lauren Sessa
Hi everyone,

Juliette is 7 pounds and 18.5 inches long!!!!!!

We finally have a surgery date set for Thursday at 8:30 am.  Fingers crossed that the surgery goes smoothly.  After the recovery period, if no new issues arise, Juliette FINALLY gets to come home!

The main goal after surgery will be to help Juliette to eat by mouth.  We hope that the g-tube is only temporary. Juliette will continue to work with speech therapists on an out-patient basis, and Mommy and Daddy every day!

Juliette will hopefully also continue to receieve occupational and physical therapy at home.  The doctors are concerned that Juliette's head circumference is only at the third percentile.  This may be due to her PVL.  Her brain is growing at a slower rate.  It is our hope that with much love and therapy, Juliette will thrive and be the best little girl she can be.  She already has a great deal of head control for a baby that is technically two and half weeks old!!

Thanks again for all the love, prayers and positive thinking.  Let's keep it up for Baby J this week!

xoxo




09/03/2013
by Lauren Sessa
Hi all,

It's Juliette's 104th day in the NICU!

Just a quick update today. Juliette is 6 pounds 1 ounce and 17.5 inches long. We just found out today that Juliette has to be 3 kilos (6 pounds 9 ounces) in order to have her g-tube/nissen surgery. It's a little upsetting because that could take at least a week, but doctor knows best. It's so heartbreaking to watch her have these reflux episodes, so at this point we just can't wait to get the surgery over with and be on the road to recovery. We are told it generally takes babies just a few weeks to recover after this surgery, and since this is the only thing keeping Juliette in the hospital, we still have a glimmer of hope that she will be home by September's end.  If not, hopefully our little angel will be home in early October. Fingers crossed!

xoxo




08/30/2013
by Lauren Sessa
Hi everyone!

The day is finally here...It's Juliette's due date!  We are happy to report that Juliette weighs 5 pounds, 10 ounces.  She is really getting chunky!  It is also our 100th day in the NICU.

Juliette's eyes were checked again and there is continued improvement.  The opthamologist is confident Juliette's sight will not be compromised.  If anything, she will just wear adorable glasses one day!

After much consideration, Juliette will be undergoing what we hope will be her final surgery soon.  Her reflux is worsening, and you can visibly see her in pain at certain times.  We continue to worry that she will aspirate into her lungs, which would cause even more damage. We are also afraid she will not improve her bottle skills for fear of it hurting whenever she tries to swallow.  The only thing that helps reflux is time, and we don't want to spend an unknown amount of additional months in the hospital.

Juliette will be getting a nissen, which is a tightening of  the flap that connects the esophagus to the stomach.  She will also be getting what we hope will be a temporary g-tube.  This will allow Juliette to be fed straight to her stomach while she is still learning to eat by mouth.  We can feed her at home with this device!  It is our hope that she can continue working with speech therapists after discharge, and the g-tube can be removed sooner rather than later.  With time, the risk of aspiration decreases as well, and we hope Juliette will be able to take all food and drinks by mouth one day!

Please keep Juliette in your prayers as she has her surgery next week....Hope for a speedy recovery so we can FINALLY bring our little miracle home!




08/27/2013
by Lauren Sessa
Hi all,

Juliette is 5 pounds 4 ounces and 17 inches long!

Some good news to report:

-Pulmonary hypertension has been ruled out, thank goodness!  Juliette's blood test came back with a level 13.  60 and above is worrisome, over 100 is a problem.

-Juliette's eyes were checked Thursday.  The surgery was a success!  She will have her eyes checked again this Thursday just to be sure there is continued improvement.

-Respiratory support remains minimal with Juliette on a 1 liter nasal cannula at 21% (which is room air.)

- Juliette's feeding tube was placed back in her stomach.  She is still on continues feeds through her ng tube.


Some frustrating news:

Juliette continues to try bottling with her speech therapists at CHOP, with mixed results.  Sometimes she can take about 10ccs of milk, other times her coordination is not good and it becomes unsafe.  Reflux continues to be an issue as well. Doctors are afraid Juliette will end up with milk in her lungs, which is very dangerous.  Feeding by mouth is the last hurdle we must conquer before Juliette can be discharged. There is talk of coming home with a feeding tube, but we are hoping it doesn't come to that.

Please keep your fingers crossed that Juliette will work out her feeding issues....August 30th (Friday) is our little girl's due date and we would love to bring her home soon!

Love Melissa




08/20/2013
by Lauren Sessa
Hi everyone,

So Juliette was transported back to CHOP and had her ROP surgery on Saturday morning.  It seems that the surgery itself went well.  The opthamologist will check Juliette's eyes for the next two weeks to be sure the laser worked.  Fingers crossed!

Our poor angel had a little trouble recovering from the surgery respiratory wise.  It took a little more time than ususal to get her breathing tube out. This, in combination with Juliette's history of desaturations (low blood oxygen concentration) when stressed, prompted doctors to perform a ct scan.  The results showed moderate lung disease with beginning pulmonary hypertension.  We always knew Juliette's lungs were compromised to some degree due to being a micropreemie, but we were also always told her lungs looked good considering.  This new diagnosis is a bit frustrating, but we take comfort in knowing that Juliette is back in the best place possible.

We are told that her lung disease is watched very closely for the first two years of life, as Juliette's lungs continue to develop.  She has to basically be put in a bubble.  Every cold, virus, infection or stress can do major damage.  Anyone who comes into contact with her must have a flu shot and use tons of Purell.  But ultimately she can be okay.

The pulmonary hypertension (high blood pressure in the arteries of the lungs which makes the heart work harder) is also being watched closely.  The neonatologist is glad it was found now, as it is still manageable. It is something Juliette will hopefully grow out of as long as we don't push her.  She will have a blood test next week to learn more.  For now, the best thing for Juliette is to put her feeding tube back into her intestines, so it bypasses her stomach and eliminates most of her reflux.  The reflux may cause milk to get into her lungs, and that would cause more damage.  Unfortunately, this delays Juliette from learning how to bottle feed and most likely means a longer hospital stay.


Today is day 90 in the NICU, and our journey will continue on for a while.  Please continue to keep Juliette in your prayers.  Our little fighter has overcome so much already, but still has a long road ahead.

xoxo Melissa




08/16/2013
by Lauren Sessa
Hi all!

Juliette is:
- 5 pounds, 2 ounces
- 16 inches long
- maintaining her temperature in a crib (vs. isolette)
- doing well with her physical therapy, moving well and has good tone

She has some trouble finishing her bottles which at this point is related to her prematurity, although if it continues, it's possible it may be due to the brain bleeds as well.  We are all hoping that this is not the case.

She is back on oxygen to help her breathing while eating.  She is also on Zantac and rice cereal to help with her reflux.

Laser eye surgery with be performed at CHOP to repair Juliette's retina and she will be discharged from there in about 2 weeks if all goes well.  Say a little prayer for our girl xoxo

Thank you!




07/30/2013
by Lauren Sessa
Hi Everyone!

It's been a while since the last update.  I'm happy to report mostly good news :)

Juliette now weighs 3 pounds 14 ounces and measures 15 inches long!  Her shunt continues to work properly and there have been no complications thus far.  We are OFF any and all oxygen support - this little lady is breathing entirely on her own!

You can find Juliette sporting the cutest little clothes and hats these days and she is maintaiing her body temperarture with very little help from the isolette.  She is drinking 1/3 ounce of breast milk in a bottle twice daily - suck, swallow, breathe takes a lot of coordination and J can only do it very slowly now but will get better in time.  Her feeding tube remains in tact so she can get complete nutrition and continue growing.

The only snag right now is that J has ROP stage 2 which is a retinal disease in preemies thought to be caused by the disorganized/abnormal growth of blood vessels in the eye.  Right now we're okay, but we may need to go back to CHOP for laser eye surgery if the condition reaches stage 3 (Please keep your fingers crossed and pray that doesn't happen!)

New pics attached.  Get ready for cuteness overload!




07/20/2013
by Lauren Sessa
Hi all - 

Sorry it has been a bit longer than usual since I have updated.  I got to see baby Juliette myself this week, finally.  What a blessing.  She is such an amazing little thing.

Melissa reports that dieticians are measuring inches on her arm each week since weight is fluctuating due to the fluid in her head.  She's definately getting "chunky" and now at weighs 3 pounds, 3.5 ounces!

The shunt is still working great after 2 weeks.  Juliette also had a liver ultrasound and there is a hemangioma present, which is not surprising since she has 5 on her body. These should go away with time and Melissa will seek treatment to help them go away faster once Juliette is closer to term. as doctors are not too concerned at this time.

And now for the best news...Doctors cleared Juliette to return to Monmouth Medical Center in NJ where she was born to finish her stay in the NICU.  She was transported today via ambulance and mom and dad could not be happier that their little girl will be close to home moving forward.  

Talk soon!

Thank you again to all who have donated, prayed and sent gifts/positive thoughts.  Very grateful for people like you <3




07/08/2013
by Lauren Sessa
Post Surgery Update from Melissa :)

So far, things are looking good.  The shunt is working properly!  It is likely that Juliette will need a shunt revision at some point given that she was so small upon receiving it, however, we will cross that bridge when we come to it.

Doctors are impressed with the overall drainage of fluid - JJ's head circumference has decreased by 2.5 cm!!  She was extubated on Friday and is breathing on her own with the help of a RAM nasal cannula.  She is 3 pounds, 1 ounce and measures 14.5 inches long. Go Juliette, you little warrior!!

New pic attached!!







07/03/2013
by Lauren Sessa
Hi Everyone - 

It's been a trying last couple of days.  Juliette had her shunt surgery on Monday.  The doctors decided that despite Juliette's weight, she would need to undergo surgery since her head size and ultrasound were both of increasing concern.  

Doctors have said that it will be about a week until we know if the shunt is functioning properly.  In the meantime, Juliette is experiencing swelling behind her ear and in her back.  We are told that this is not surprising given that she is so small and there are only so many places the fluid can drain to. She is being monitored closely and we are hoping and praying that she will not need a revision at this time.  

Our poor angel is also experiencing some puffiness/coolness in one of her arms.  Doctors believe it to be a spasm vs. a more serious issue but they are keeping a close eye on it for sure.

Neonatologist, Neurosurgeon, Hematologist, Orthopedist and Radiologist are all of the visitors that Juliette had today.  This baby does not have it easy.  Please keep praying for both Juliette and her family - it is so painful for them to watch her like this day in and out.  

Stay strong baby girl.  You are loved more than you know.

xo
Lauren








06/28/2013
by Lauren Sessa
Happy Friday Everyone!

Juliette was reintubated yesterday for a breathing tube.  This decision was made mainly to save energy sine she was working too hard to breathe with the CPAP.  The goal is to have her gain weight as fast as possible and the breathing tube will allow her to do just that.  She will need the breathing tube for her shunt surgery anyway, so it will remain in until after that time.  

Juliette gained another ounce so she is at 2 pounds, 9.5 ounces now!!  She is receiving 6 ounces of breast milk daily which is 150 calories.  She is still experiencing some Brady's but they should subside once the shunt is installed.  If they happen to contiue too frequently before then, early surgery may be necessary so let's send positive energy her way so that wont be the case!

New pic added, check out how cute this little love is!!







06/26/2013
by Lauren Sessa
Hi Team Juliette :)

I got an update today from Melissa.  She says that Juliette now weighs 2 pounds and 8.5 ounces - slow but steady is a good thing.  She is eating 5.6 ounces of breast milk per day which equals 135 calories!

Juliette's head circumference is still stable at 27.5 cm and the doctors are monitoring her daily.  As of today, the temporary tap to relive fluid is not necessary so we are just waiting for her to get nice and chubby so she can have her shunt surgery when she reaches 5 pounds.

New pic attached.

Keep praying
-L




06/20/2013
by Lauren Sessa
Juliette was transferred to CHOP on Tuesday.  She did great on the ride down despite the horrible rain, flooding and traffic.  She now weighs 2 pounds 3 ounces!!  Hooray for some weight gain!!  She continues to have bouts of apnea and bradycardia due to a combination of trying to find the proper CPAP setting as well as the extra fluid in her head.  It is also a common preemie problem.  

The neurosurgeons at CHOP would like to avoid a temporary procedure such as a reservoir (since those are highly susceptible to infection) unless it's absolutely necessary, and right now, it is not.  

She continues to tolerate her feeds of 4 ounces a day.  They are also adding a fortifier to bring her total calorie count per day to about 96. This will hopefully help Juliette to gain weight more quickly so that she can get nice and big for her brain shunt surgery.

Keep moving forward little one!  We all love you!




06/17/2013
by Lauren Sessa
PRAYERS NEEDED !!!

Juliette did not have a good day yesterday.  She received a blood transfusion, so the doctor stopped her feeds and started her on antibiotics because they suspect an infection. She also had lots of bouts of apnea on Saturday night and yesterday morning. Right now, we are not sure if it's due to infection or the fluid build up that is getting to be too much for her brain.

Doctors at CHOP will be consulted today to determine the next course of action.  Baby J might have to undergo the ventricular tap procedure earlier than expected which brings on a whole new set of risks.  

PLEASE PRAY - I'll update as news becomes available.







06/17/2013
by Lauren Sessa
PRAYERS NEEDED !!!

Juliette did not have a good day yesterday.  She received a blood transfusion, so the doctor stopped her feeds and started her on antibiotics because they suspect an infection. She also had lots of bouts of apnea on Saturday night and yesterday morning. Right now, we are not sure if it's due to infection or the fluid build up that is getting to be too much for her brain.

Doctors at CHOP will be consulted today to determine the next course of action.  Baby J might have to undergo the ventricular tap procedure earlier than expected which brings on a whole new set of risks.  

PLEASE PRAY - I'll update as news becomes available.







06/14/2013
by Lauren Sessa
Hello Everyone - 

Good and Bad news today :/

On a happy note, Jules has been sucking on a pacifier every now and then, which is so great.  She has not had any bouts of apnea thus far and her lungs are doing remarkably well considering her gestational age which would have been 29 weeks today.

As wonderful as these little victories are, Jules has a long and serious road ahead.  Because she was born so early, she suffered high grade brain bleeds on both sides of the brain.  The medical term for this is Intraventricular Hemmorrhage (IVH).  Grade 4 is the highest level.  Due to the bleeds, she now has a condition called Periventricular Leukomalacia (PVL).  This means that she has damage and softening of the white matter, the inner part of the brain that transmits information between the nerve cells and the spinal cord, as well as from one part of the brain to another.

What does this mean?  Well, the doctors can only give the worst case scenario since every baby develops differently.  Babies with PVL have a higher risk of developing cerebral palsy (a group of disorders that prevent the child from controlling their muscles normally), and may have intellectual or learning difficulties.  This said, babies brains have an amazing capability to help other areas of the brain that have been damaged, so, with consistent therapies and early intervention, there is still hope that Juliette will live a relatively normal life.

Unfortunately this is not the end.  Juliette has been diagnosed with hydrocephalus (previously mentioned in the fundraiser summary).  She will most likely need to have a shunt installed to drain the fluid that is building up in her brain.  If so, she would have this for the rest of her life.  

My heart is so heavy having to deliver this news.  Please continue to pray and to share this fundraiser.  I have attached a new picture of Juliette for you to see :)  I remain hopeful that Juliette will surprise us all.  Her will and fight so far has amazed me.  

We love you Juliette!

- Lauren





06/12/2013
by Lauren Sessa
Juliette is 1 pound 12 ounces today!  So close to 2 lbs!!  She measures 13.5 inches long.  Little peanut :)

Feeding has been increased to 4 ounces of breast milk a day (via feeding tube) which equals a whopping 80 calories.  She has a bit of reflux but we are told that is normal at this stage.  

Her head circumference has remained the same today and an ultrasound is scheduled for tomorrow.

Keep praying!







06/10/2013
by Lauren Sessa
Today was a really great donation day.  Thank you to everyone who continues to donate and share. 

Some mixed news today:

- Juliette is up to 1 pound, 10 ounces and has opened both of her eyes :)


- Melissa says that she loves to hear her baby's little voice.  She lets out a cry when she is placed on her back since she seems to prefer to sleep on her belly.

- Unfortunately, Juliette's head measurement was slightly increased today which is the opposite of what we want.  PLEASE send prayers that this will cease or resolve.

Your continued supported is so appreciated.

xo
Lauren








06/07/2013
by Lauren Sessa
i everyone!

A few happy updates today.  

1. Breast milk intake has been increased to 10 cc's every 3 hours (That's 2 teaspoons)
2. Baby Juliette is starting to open one of her eyes!
3. Melissa got to hold her little bundle of love today after 3 weeks in NICU.  Next week will likely be kangaroo care time!  Weee!!

I've posted 2 new pics for everyone.

Thank you
Lauren




06/07/2013
by Lauren Sessa
Due to popular demand, I am raising baby J's piggy bank goal.  I am BLOWN AWAY at the generosity of everyone.  I continue to get calls and e-mails requesting info on how they can donate. People I dont even know have contacted me.  People like this restore my faith in humanity.  




06/06/2013
by Lauren Sessa
Hello all :)

Huge thanks again to everyone who has donated.  Your compassion and empathy is inspiring.

Doctors should know by the second week in July if Juliette will need to be transferred to CHOP (Children's Hospital of Philadelphia) for a ventricular tap, which is the step that preceeds shunt installation.  If so, she will stay at CHOP for 4-8 weeks before a final decision is made about installing a shunt.  

A bit of happy news...Juliette was taken off of ventilator support yesterday and now relies on CPAP to breath which is a huge improvement! Definaltely something to be celebrated!  Doctors will monitor this closely and make sure baby Juliette is not stuggling to breathe at all, if so, she will be transferred back to the ventilator and we will go from there.  Everything is day by day at this point but we should definately celebrate the small victories of this little wonder child :)

Keep the prayers coming!








06/04/2013
by Lauren Sessa
Hi All -

I wanted to let everyone know that I increased the goal for Juliette's fund. I did not anticipate such an overwhelming response in the first couple of days - I have been getting emails and calls from people who want to contribute as well. Since so many people who have not donated yet have expressed an interest, I raised the goal so that no one would be shut out from being able to help. 


Juliette remains stable this week so far and weighs 670 grams.  She is eating (via feeding tube) 6 cc's of breast milk every 3 hours.  Her next cranial ultrasound is scheduled for Thursday. 

THANK YOU 
Lauren




06/03/2013
by Lauren Sessa
I am so humbled by the outpouring of support for the Gerbino's in just the first 24 hours of this fundraiser.  THANK YOU so, so much!

Right now, the doctors are focused on keeping baby Juliette healthy and gaining weight so that she will be ready for her surgery when the time comes.  She needs to be a certain weight before she can undergo a major operation.

God bless you all and keep the momentum going.  There are so many expenses related to this unforseen journey that it makes my head spin.  I will post updates on sweet baby J as they become available.

-Lauren


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