Tuesday, August 11, 2015

An Update: Olive the Toddler Part 1

It seems like it has been a lifetime since I have written anything about Olive and her progress. Mostly because she has been doing so well health wise. We are 1 year and 2 months out of the NICU (Neonatal Intensive Care Unit). We are getting close to the 1 year mark of the first time her oxygen was off and we could see her beautiful cheeks. She is almost walking. But the thing that gets me the most is: she is eating.

To give you some background, Olive was born at 26 weeks gestation. That is 14 weeks early in terms of a normal pregnancy.  This was 6 weeks after my water broke. She was on oxygen support for the first 7 months of her life and in the NICU for the first 5. She had 3 surgeries before coming home. One of which gave her a long term feeding tube called a Mic-key Gastronomy Tube or more commonly known as a "g-tube" or "g-button".

The reason for the g-tube is that at 3 months old, it was discovered she aspirated. There wasn't a clear reason why she did, but a combination of her prematurity and the lack of amniotic fluid before birth were often mentioned. Upon coming home from the hospital, insurance issues caused her to lose two months of speech therapy. Once she finally began feeding therapy at home, she had already lost her interest in taking a bottle.

Fast forward to January of 2015. She is 1 year old. She is not taking enough by mouth from a bottle or cup to do another exam to see if she is still aspirating. The therapist performing the exam decides to try giving it by syringe and this time she passes! We are told to take it slow, but we should be able to give her nectar thick liquids and see how she does. So we do. Months go by and we are giving her water, milk, juice and while on a rare occasion she takes a little bit of volume, the only thing she really takes very much of is lemonade. The only solid foods she will take by mouth are potato chips.

To say it was frustrating was similar to saying that blue whales are large animals. We began testing the limits. One evening a few weeks ago, we were eating pork chops (the kind without the bone). I gave her a small piece of mine, maybe the size of mini candy bar. She began chewing on it. After a few minutes, we noticed that the pork chop was getting smaller. She was eating! As we experimented, she began eating more and more.

And then she got a cold. While momentarily, her feeding slowed down, she was still eating. Because of her history and the fact that she had a high temperature and a bit of coughing, her doctor decided it would be best to do a chest X-ray. Her pediatrician quickly called me to discuss the films. While her lungs looked clear, there were a few notes the radiologist made.

Back in January she had a chest X-ray at the local children's hospital emergency room.  The same X-ray company who administered her recent X-ray does the imaging in this particular hospital also. The radiologist who looked at the films for the new X-ray commented on two things that he had noticed on the January X-ray.

First, along with her g-tube surgery, she also had what is called a Nissen Fundoplication to better control her reflux and hopefully reduce aspiration. It seemed that the Nissen was herniated and part of her stomach is in her chest. This actually explains a common problem she has with a rattling in her chest after having reflux. Her Surgeon said that as long as there are not outward signs of distress, she is completely fine and will grow out of it.

The other, was a little bit more concerning. They could see a narrowing of the trachea (windpipe). It was notated as "stenosis" on her X-ray, but her Pulmonologist assured us that it was not stenosis, and more than likely not as serious. He did want to investigate what was causing the narrowing, and felt that a CT scan would be the best way to see this. Depending on the CT scan we will know what, if any next steps we will take. This could take a few days.

Overall Olive is very healthy. While she has her good days and bad days as far as eating goes, I think that is pretty normal toddler behavior. We are incredibly proud of her regardless, and have taught her to celebrate her achievements. She has learned how to tell us no, how to do many fine motor activities, climb on pretty much anything that she can get herself onto and tell us she wants to watch Frozen. She also sings "Let it Go" for the majority the words she says.

We are hoping to give you all some good news about her CT Scan soon, and want to thank you for all of your praying. We have seen Olive come so far past prematurity that we know this will just be another bump.
Olive with Harmony Bear at 1 month.
Olive with Harmony Bear at 18 months.

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