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To the rescue for SuperMilan's tummy!

$2,474 of $5,000 goal

Raised by 41 people in 4 months
Milan Matteo was born 10 weeks early due to preeclampsia and growth restriction. He made his big entrance to this world at 2 lbs 4 oz. On day 3 of life, Milan had a bowel perforation requiring his first surgery. Two weeks later after no improvement, he went to the OR for the second time, requiring the placement of an ileostomy.

About a month later it was time to put him back together since he was not able to tolerated feeds and his stoma had protruded. He lost more intestine but ended up getting reconnected yet he was never able to pass stool. 

Surgery number 4 happened just 3 weeks after, this time it was an obstruction. The recovery for this surgery was the worst, we got a call the next morning from the doctor letting us know his body was in shock and really really sick.

He was able to recovered but yet again not able to pass stool and his belly kept getting distended.

On December 5th we were told he had perforated again! He went to the OR for the 5th time for an emergency surgery. Just two weeks after he almost lost his life due to the rough recovery. We were in complete disbelieve and I as a mom was preparing myself to let him go. I just couldn't wrap my head around the idea of this little tiny body being able to handle so much. I almost lost faith on him but he proved me wrong and showed me the SuperMilan he is! 

He now has an ileostomy AGAIN! In total he has lost 50 cm of intestine. He has never been able to tolerate full feedings, has had problems with dumping, dehydration, and electrolyte imbalances. He is being treated as a short bowel baby. His intestines don't have the ability to fully digest and absorb nutrients essential to live. Due to this he is fully dependent on TPN, nutrition he gets through his veins. The current medical team does not have a clear explanation or diagnosis for all the complications and intestinal issues he has had. 

The plan was to take him for a 6th surgery where would have to lose more intestine due to a new obstruction on the lower part of his bowel, and lose his ileocecal valve, which would have a life long impact on him.  

The hope is to get Milan into a Top Intestinal Rehabilitation program as soon as possible for a second opinion. Hopefully to finally be able to get some answers and prevent him from having more drastic surgeries and complications in the future. Doctor's at Cincinnati Children's Hospital have been advocating for Milan to get there, but it has been a real fight with insurance, doctors, and people who believes this is almost an impossible task. 

As a family we have already suffered a great deal financially with out of pocket expenses, not being able to work as much. We could use your help in getting Milan to Cincinnati Children's, and should a transfer happen, I as a mom would have to temporarily relocate until Milan receives the specialized care he needs and a plan to bring home to be shared with the team here in Chicago.

The funds would be use for bills, food, transportation, and all out of pocket expenses both here in Chicago and in Cincinnati. I appreciate your help in helping get SuperMilan the care he deserves!
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We still need your support !!

We are on day 4 post reconnection surgery, Milan had a hard time with pain management and now that we have that under control, we are praying for poop
His belly is still pretty distended and firm and a good amount bile is coming out of the tube his has going into his nose and down into his belly.
I’m praying that his body just needs a little more time to be able to pass stool but I am getting concerned!
Even after stools we still have to work on maximizing his feeds and decided if he will need to go home on TPN, which is the nutrition he gets through his IV. We’ll be in Cincinnati until Milan needs to, which means we are trying to survive and pay all of our expenses out of one I come only, my husband’s.
Please I appreciate your prayers, support and sharing Milan’s story !!

Thank you
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Hello everyone!

Just wanted to give you an update on our stay at Cincinnati.

We have had lots of ups and downs, both good and bad news. Good news is that with the first surgery here the surgeon was able to find "his problem" an ileal webbing/atresia that would completely blocked things from moving through, causing the obstructions, perforations and surgeries he ended up having back home.

Since then we have been able to refeed stool into the his colon and it has grown in size! He has been stooling like crazy, which is a good thing and means things down there work and are able to work its way down.

Unfortunately, Milan's stomach is not functioning properly at the moment, at some point he was throwing up a lot, had thrush and ended up developing an oral aversion, which will need work and therapy once we are home.

Tomorrow Milan will have his 7th surgery!! Where he will be put back together and have a GJ placement to be able to receive nutrition through there.

His intestines as well as his stomach will need time to adjust and recover completely from all the messing around they have done in his belly.

Tomorrow is a big day so I want to ask for all the prayers we can get for a safe surgery and quick recovery.

Take care

Monica and Milan
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Yesterday Milan had surgery and has been struggling a little bit his recovery but hanging in there. I hoping tomorrow will be a better day for him, I can’t wait to hold him and see him smile again. The surgeon was pretty happy with how surgery went and predicts a good outcome!!
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We made it to Cincinnati today. It’s been a little scary, nerve racking and overwhelming to be in a new place and to meet so many new people !!

Please keep praying for us
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Raised by 41 people in 4 months
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