Wyatt Joseph Forte

Friday, September 9, 2011

I can't believe how long it's been since the last post- I never even put up his birthday pictures! Not much to report health wise with Wyatt... he is still eating a decent amount of his calories by mouth (about 50% g-tube/50% oral). He still loves mac n cheese, hot dogs, and strawberries- typical 2 year old food. We were able to stop his overnight feeds through the pump, making our night routine a lot easier. We were even able to finally move him out of our bedroom after 2 years. He and Ryan are now sharing a room- something they were both really excited about, "super cited" as Ryan said. We met with Surgery and Nutrition this week after a 2 month break. They were pleased with him overall, but disappointed in his weight as usual. He is still hanging around 22lbs... gaining a few ounces since his last appointment. We are going to try to add a little formula back in to see if we can get some meat on his tiny little bones. It's hard enough to get enough calories into a kid with CDH, but he does not sit still for one minute. It would be hard to find a more active kid- he is constantly hanging or climbing on something in the house.

2nd Annual Ronald McDonald House Dinner

Wyatt's 2nd Birthday Party

Neither one of them has a clue how to steer that thing!

"Happy to you"

His new favorite hiding spot

Taking a little juice break

Trimming up his birthday mohawk

Ryan's family portrait- so cute! Yes- she wrote Carrie, not Mommy... no idea why.

So proud of her work!

Finally a nice enough night to dine outside

... or stand on the table!

Tough guy!

Hanging out in the house!

Strutting his stuff in the cul-de-sac with nothing but his favorite socks!

SO excited to visit her school this morning- getting ready for her 1st day of Pre-K on Monday!

2 comments:

hollySep 9, 2011 01:27 PM
Carrie,

I just wanted to let you know that CHOP surgery, cardio, and nutrition are NEVER happy with Ruby's weigh gain. I know Ruby and Wyatt are different cases. Our docs here in Austin are never as worried about it. Of course Ruby isn't on a feeding tube. She's just shy of 23 lbs and gains just an ounce or two month. I've finally just told myself we are doing everything we can. She eats and is on high calorie formula. I know it's hard. I just wanted to share.

Ruby NEVER sits still, too. What is it with our kids who need to gain weigh and never sit still!

Both Ryan and Wyatt look so cute!
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Smilen ChampJan 30, 2012 06:05 PM
Hi Wyatt

My name is Jenna and I came across your site. You are an amazing, precious gift and special earthly angel. You are full of courageous, strength, determination, and fight. You are a brave warrior, smilen champ and an inspiration. You are a super hero, super trooper, and a tough cookie. You are full of life, spunk, joy, smiles, and sunshine. You have taught everyone about life, and the gift of life. You will be in my thoughts and prayers. http://www.caringbridge.org/visit/champ291 I love it when people sign my guestbook.
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About CDH

The baby has what is called Congenital Diaphragmatic Hernia (CDH). It basically means that there's a hole in the diaphragm muscle and the stomach and bowels have moved up into the chest cavity and are crowding out the lungs, preventing development (pulmonary hypoplasia). This occurs in about 1 out of every 2,500 live births and the cause is not known. Across the board, the survival rate is about 50%, but this varies greatly with each individual baby- depending on their amount of lung development at birth, timing and type of treatment given, presence of any other complications, and many other things. The baby is going to be born in critical condition in the new Special Delivery Unit of CHOP. Without medical intervention he/she likely wouldn't live more than 20-30 minutes. We will not be able to hold the baby until he/she is stable which could be weeks. The same goes for baths, diaper changes and even touching. They will try to let me see the baby right after delivery and before he/she is intubated. He/she will be intubated and on a ventilator within minutes of birth so I may have to wait until I can get them to wheel me down to the NICU. There will be tubes put through the mouth and/or nose into the lungs and stomach to drain fluid, feed, and assist in breathing. Once the baby is stable enough to be moved Jason will go down into the NICU while I recover from surgery. Because the baby will have many tubes and wires connected to it, he/she will need to be sedated and most likely will stay sedated most of the time in the NICU. CDH babies need as little stimulation as possible. Sometimes just changing their diapers can cause them to crash.The surgery to move the bowels and stomach back into the abdomen will hopefully happen within a few days of birth. However, they will not perform the surgery until he/she is stable enough to survive it. We do know that Dr. Adzick (Chief of Surgery) will be the one to perform the baby's surgery. The surgery will take place in the NICU so the baby will not have to be moved. Our main concern is Pulmonary Hypoplasia though, not the fact that the stomach and bowels are in the chest, and this will have to be addressed first. It's the lungs that we are really worried about. We won't know until birth as there are no prenatal tests for quality of lung tissue. Before the surgery the baby will only be fed through an IV because they want the stomach to remain as small as possible. After the surgery, the baby will be fed breast milk through a feeding tube as soon as he/she is able to eat. Children with CDH frequently have oral aversions, due to having so many tubes in their mouths and having food direct pumped into their stomachs. This is another reason why doctors have told us to prepare for a 2-3 month NICU stay.The baby's Lung volume to Head circumference Ratio (LHR) is 1.3: anything below 1.0 is considered severe. The good news is that based on the LHR and prenatal tests, the doctors have put this baby in the best category ~ 90% chance of survival. We've been told that there is also a 20-25% chance of needing ECMO (heart lung machine for babies). We are really hoping to aviod this. ECMO is a last resort to give the heart and lungs a rest. It has ALOT of really scary side effects. We have a long road ahead of us and we just don't know what will happen. Having even a 1 in 10 chance of your baby dying is still very terrifying, but we are SO fortunate to have the best hospital in the world for this situation right here, and the doctors at CHOP continue to be very optimistic. We are doing everything we can to give this baby the best chance possible and we thank all of our friends and family for their support. Keep in touch!

Friday, September 9, 2011

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