Tuesday, November 24, 2015

Neonatal Follow-up Clinic appointment

Today was one of my most-looked-forward-to appointments: Neonatal Follow-Up Clinic day!

The reason I love these appointments that come once a year is that Elsie is looked at and evaluated by several specialists in different areas. I really like knowing how she is doing compared to her same-age peers, and what things we need to work on. This place has such great resources for parents and families in need, and they truly want the best for each child.

Today's appointment went very well. Elsie was seen by a speech & language specialist, got her vital signs taken, did cognitive testing, and was seen by a developmental pediatrician. All of the people we encountered were thoroughly impressed with Elsie. She is at her age-level or above for both speech & language and cognition. The lady who did the cognitive testing was stunned when I told her that Elsie had had Grade 2 and Grade 4 brain hemorrhages.

I talked to a few people there about when we could remove Elsie's gtube and who had the final say in authorizing its removal. We haven't used her feeding tube since July. I can't even imagine using it ever again! Elsie is doing so well eating orally. She eats like a typical 2 year old in every way. I know there are some doctors who recommend leaving the tube in until after cold/flu season is over, just as a precaution in case extra fluids or medicines are needed if the child gets sick, and that is reasonable. It won't be the end of the world if we keep it in until spring. I don't think it's necessary, but it won't be the end of the world. We all decided that I would call the GI clinic at Primary's, where Elsie's gtube was placed, and ask what their recommendations were.

I called the GI clinic this afternoon, and the nurse I spoke with didn't see any reason why we should keep it in, but she sent a message to the GI doctor to get his approval. Since it is almost Thanksgiving, she said they might not get back to us until Monday, but that they would call us back when the doctor responded. This possibility of being done with the feeding tube very soon is very exciting to me. Again, if the doctor says that we should keep it in until spring, I'll be a bit disappointed but it's not the end of the world. After all, spring will be here before we know it!

I'm so proud of my sweet little girl today. Elsie is incredibly smart and has overcome so many obstacles. I love her so much!

Tuesday, November 10, 2015

World Prematurity Day

November 17 is officially "World Prematurity Awareness Day", so I've been seeing a bunch of articles in my news feed on social media lately about preemies. One thing in these articles that always strikes me is when they discuss "viability", or in other words, the cut-off date between being too little to save vs. working to save the child's life after he or she is born. Being "viable" has typically been set at 24 weeks. When a child is born at 24 weeks or later, the doctors will do everything they can to help the tiny baby survive. Before 24 weeks, it is generally a decision between the parents and doctors if they want to try to save the baby, with the knowledge that if the baby lives, she will almost surely suffer from physical and mental disabilities throughout her life.

While I was reading an article on prematurity this last week, a thought came to me that I hadn't thought of before. Did any of our doctors ask us, before Elsie was born, if we wanted to try and save her? Or did they just do it? I could not remember. So I asked my live-in memory bank, aka Clayton who remembers everything, and without hesitating he responded "Yes." The doctor at our local hospital, before she summoned the helicopter to come save us, asked if we wanted to save our child. It jogged my memory a bit, and I remembered.

She asked us if we wanted the doctors at the U to try and save our baby's life. At this point in my pregnancy, I was 23 weeks and 1 day pregnant (Every single day that they remain safely inside their mother's womb is hugely important for a micro-preemie, so that's why I differentiated that I was 23 weeks and 1 day. Elsie's development would have been drastically different had I been 23 weeks and 6 days pregnant, even with just 5 days more inside of me.). Elsie was not yet in the "viable" category, and the doctor told us that she only had a 25% chance of survival. And if she were to survive, she would almost definitely have a range of physical and mental disabilities. Did we want the doctors to try and save our daughter?

Without hesitating, even though our hearts were breaking, both Clayton and I firmly answered yes. We wanted them to save our daughter's life.

I know now that Elsie is kinda special, in the fact that she doesn't have any lasting effects of her prematurity. She has truly defied the odds, especially considering the bleeding that happened in her brain in those early days. But even if she had disabilities, would we love her any less? Of course not.

Every day, we are thankful for the medical miracles, modern medicine, and skilled nurses and doctors that kept our dear child alive, despite the odds that were stacked up against her. Elsie was not considered "viable", according to the technical terms. She should not have survived, but she did. May she always be an example to keep trying, keep persevering, and overcome the obstacles in your life. Miracles happen.