The Hospitals

Nadia's First Place of Residence

Nadia was born in a newer hospital. Luckily, the NICU (Neonatal Intensive Care Unit), was very private and each child had his and her own room. Nadia's room was very large. Her incubator was in the middle of the room and surrounded by lots of equipment. It had a bathroom, a recliner, and a couch that folded out into a small bed.
It was hard to get used to all the strangers constantly coming in and out, but after a few weeks I was on a first name basis with most doctors and nurses. My daughter's father worked full time so I tried to make a schedule that would fit all our needs. I did crafts and read a lot about Nadia's treatments and possible outcomes. The most difficult part was being in a strange place and having to sit and wait the majority of the time. I couldn't do much to help Nadia at this point but to learn and be prepared for what was to come.
After several months we were transferred to a specialized children's hospital. The NICU consisted of several children in one room. Parents were not allowed to sleep in the area, so many nights I slept in the waiting rooms. There were positive and negatives to this situation. On one hand I missed not having the same privacy as before but on the other, it helped me to interact with other parents who were going through a similar situation.
After several weeks, Nadia moved one more time within the hospital. She was sent to the ICU (Intensive Care Unit). Here we had our own room that I could stay in with Nadia. I slept many nights in an older style recliner. Somehow it was always comfortable. Sleep became a little harder because Nadia was moving a lot more now and would set her alarms off often. This is the first place I began the process of adjusting to alarms and emergency processes.
Nadia's father and I did all our learning in the ICU. In order to bring our daughter home we first had to undergo extreme training. It took many days and nights of watching and being tested. We tried not to fight but as the day grew closer our nerves grew stronger.
When the day arrived we were fully prepared and glad the nurses and doctors had been so anal the last 3 months with our training. Every piece of information we were told became vital to the safety of our daughter outside the hospital.

Bath Time

Bath Time



Nadia, 7 months old, during bath time.



When Nadia first came home she was still ventilator dependent. We would do all of her care on the floor to make sure there was nothing in our way.This is a infant tub you can buy at most large stores, like WalMart. It worked perfect for us until Nadia was able to sit up on her own.

We only filled the tub about 2 inches deep to make sure she could not slide under. Johnsons Baby shampoo and Dove bar soap worked great for Nadia. Of course we would have everything in place for getting dressed, gauze changes, and emergency trach changes as needed. Most of the time it was a 20 minute process and she would fall asleep during the last 5 minutes.

Nadia has never been afraid of water. As soon as she could sit up we switched to giving her baths in a Bumbo in the tub. Again the water stayed below a few inches and we never left her side as long as there was water around her. Although Nadia is big enough now to sit in the tub, I continue to keep her in Bumbo unless we are washing her bottom because she has no idea that the water is fatal.

Introduction to the Blog

Introduction to the Blog

Nadia

24 Week Premie

Weight: 1 lb 12 oz

Length: 12.75 inches





This is my daughter, Nadia, 1 month after she became trached. She is now pushing two years old. The tracheostomy was the largest surgery my daughter has had to endure so far. She also has a G-tube. Her story is very long and full of many triumphs and sorrows. Someday I hope to write it all down in a book. 

I want to focus this blog on specific moments throughout our journey that may be comforting to other parents with trach babies. I also have some helpful tips that have helped my family during difficult stages of our child's development. 

If you have specific questions or topics you would like to discuss please comment or email me. I am not an expert by any means, but I have had lots of experience. There were many times that I would have liked some advice or at least someone to tell me I am not alone. I hope you can find this blog to be of some help.