This is her story taken from Amelia's Caring bridge webpage
Born January 25, 2011
5lbs 3oz
18" long
Thus began the journey...
Immediately after birth Lyla was taken to the NICU at Edward Hospital (where she was born) because of difficulties breathing and with concerns based on head shape and size.
For the next 3 weeks, many, many tests were run on Lyla to begin understanding some of the complications she was exhibiting.
She was diagnosed with a partial deletion of chromosome 19. There are only 5 known cases.
One of the characteristics Lyla has is Cranial Stenosis (cranial meaning of the skull, stenosis meaning fused) = fusing of the skull.
She also diagnosed with Laryngomalacia (Laryngomalacia is the most frequent cause of stridor or noisy breathing in infants. It occurs as a result of a floppy portion of the larynx (voice box) that has not yet developed the strength to provide rigid support of the airway. During inspiration, negative pressure is created through the larynx, which results in a collapse of these structures into the airway and a narrower breathing passage. The partial obstruction is the source of the noise with breathing.) ---This is believed to be something separate from the Chromosome.
After becoming stable with a little weight gain and steady breathing with oxygen, the doctors felt she was ready to come home. She spent 3 weeks total in the NICU.
3wks:
5lbs 8oz
19.5" long
Once home, she began to struggle with weight gain. We worked closely with lactation and Dr. Olsen (our pediatrician) to find the best solution to help her begin gaining the proper amount of weight.
We began putting her on Polycose, a high calorie fortifier to be mixed in with expressed breast milk.
Shortly after beginning the Polycose, we noticed that she began eating less and spitting up more. Both not good strides in getting her put on the weight she needed.
On March 10th, we took her to see Dr. Olsen for a check-in because of these 2 factors. At that time, he decided to have her admitted back to Edward for additional airway testing.
After being admitted into the PICU, it was noticed that her O2 levels and respiratory rates were very low. They did a blood draw to get an accurate reading of all of her levels. At that time, it was discovered that her CO2 levels were dangerously HIGH! The doctors explained this was the reason why she was not thriving with weight gain. Her body was using her nutrients to work over-time to push the CO2 out through the kidneys as opposed to breathing.
The decided course of action would be to put her on a very high flow of O2 to get her breathing better. She also began having apnea spells in the hospital. The doctors believed that the apnea was caused by a neurological disorder called: Central Apnea. (Central meaning Brain). Overnight, they did a sleep apnea study on her. The next morning they did another blood draw to read levels and learned that her CO2 levels had continued to rise.
At this time, the doctors had a very tough conversation with us. They explained that because the levels were rising and not dropping that she would enter a fatal state in which her body would begin to shut down to the point of death.
The immediate options they believed she needed were intervention of being intubated or to have a tracheotomy and ventilator system administered. Both of these they would be life long needs.
It was decided that the University of Chicago was the best place for her because we had already met with the neuro and plastic surgeons that are on staff there and knew that's where we needed to be because they are the best in their fields so we know the rest of that hospital are as well.
Lyla was admitted by 5PM....
Last night Amelia was given the fantastic news that her and David would be able to take their sweet little girl home, until Skull surgery. Today they found out that last night's sleep study revealed a airway obstruction and now they are talking Tracheotomy.
This has been such a hard time for the Hendryx family and I can't imagine what they are going through. All I know is I am here to offer them any support they need. I think about them daily! My heart is so sad for them! I just want this to end. I want Lyla to be better!
Please read more about Lyla and share your support with the family here
Lyla's Story
2 comments:
Such a sad story.
~Felicia
Oh I am so terribly sorry. This just breaks my heart Laura. I really hope and pray that things will work out for this sweet baby girl. Please keep us updated and I will check on her page as well. Prayers to this family.
Post a Comment