Ok, I am going to start trying to post daily so for my new followers this is just to explain Scarlette's conditions and why she has to have surgeries, and therapies and g-tube etc.
Scarlette was diagnosed with congenital diaphragmatic hernia when I was 26 weeks pregnant. CDH is a condition in which during the first trimester the diaphragm, the muscle that seperates the chest cavity from the abdominal cavity, does not form completely, leaving a gap or hole in the diaphragm. There are many different shapes and sizes, Scarlette's hole was the entire front right side. This is one of the most uncommon hernias to have. The reason this is dangerous is because when there is a hole it allows organs to travel up into the chest cavity impairing lung function and growth. By the time Scarlette was diagnosed with CDH her liver was sitting on top of her right lung.
Fastforward to birth: when Scarlette was born she was entirely dependent on a breathing machine because they didn't want to challenge her lungs in their diminished state. She was intubated (like what they do when they put you deep under anaesthesia, with a tube down your throat to physically force open the lungs) for 9 days and then put on a regular breathing tube in her nose, but with extremely high pressure. Once she was extubated we learned about her other congenital conditions which we did not know about previously.
First, we found out she had a cleft palate, which the doctors didn't see until she was extubated. Cleft palate can affect feeding and breathing functions, and in her case significantly affected her suck/swallow motions. We also found out about her chromosomal deletion and translocation at this time. It was a spontaneous deletion, meaning it was not inherited, and at this point they have no research on her specific deletion. The only concrete information they can give is that it is approximately 100 genes that are deleted.
Scarlette was in the NICU for 59 days post-birth and this was mainly to wean her almost completely off oxygen and basically allow her lungs to grow and function as normally as possible with her liver on top of her right lung. She came home unrepaired, meaning her hernia was still open. She was on oxygen and a feeding tube with very limited oral feeding.
At 10 weeks old she underwent her CDH repair. She was in the hospital for 5 days due to a lung collapse, but bounced back quickly and came home able to breathe completely on her own, with no oxygen assistance! She was still using the feeding tube on and off until she was seven months old.
2 months ago she had her cleft palate repaired and although the surgeon did a fantastic job it has not really increased her desire to ingest liquids orally and she is still struggling to gain weight, hence the g-tube surgery later this month.
Her other symptoms stemming from either the deletion or as a result of having the CDH are heart murmurs, kidney reflux, severe eczema and allergies and the biggest obstacle of all is her severe hypotonia or low muscle tone. This is why Scarlette is just now rolling over and ALMOST sitting up at 14 months old. Her legs and arms are very strung, but she has very low muscle tone in her core and we work with therapists 5 times a week and daily by ourselves to help strengthen her core and help teach her how to achieve her milestones.
I hope that this post will help you all better understand Scarlette's condition and if you have ANY questions please let me know! CDH often comes with other medical problems, leading us to "think" that it is genetic, but although a little research is being done the cause is still largely unknown. Not all CDH babies have a chromosomal deletion, and those who do don't have the same one. Hopefully in time we will find a cure. Right now a baby is born with CDH every 10 minutes. Only half survive. I encourage you to explain to everyone you know about what CDH is, what it causes and to help spread awareness!