Neonatal Intensive Care Unit (NICU) Nurses

I read a post today that made me think back to Emma's first month and all the emotions I went through every evening when I would have to go home and leave my baby in the care of amazing strangers that I trusted immediately without even knowing them. It was a letter a mother wrote to NICU Nurses. She wrote of the amazing care they gave, the knowledge they possessed, and the empathy they had for every baby they cared for. The bond that develops between the NICU Nurses and the families that they help is one that changes them. I know, because it changed me.

While I hated leaving Emma at the NICU each night to go home to take care of my dogs and sleep, it was a weight lifted off my shoulders knowing that the Nurses caring for her in my absence were the best people I could hope for. They had years of experience I didn't, knowledge about how to respond to her that I would learn, and a medical team to help if any emergency arose. She was in the safest place for her until she was strong enough to come home with me. I asked countless questions and did my best to be a sponge and soak up as much of the knowledge they shared that I could. Every day I was there with my daughter, I was learning from the best teachers how to care for my baby girl.

During one of the most emotional times in my entire life, when I found myself scared, excited, and unsure all at the same time, I was inspired by the strength, courage, and amazing hearts the Nurses had every day for every child they cared for. Like the mother that wrote the post, I too saw babies that didn't leave the NICU to go home with their families. I saw the pain the Nurses felt when there was one less bed in the pod then the last time I was there. Since Emma was in the first bed of the critical pod at the front of the NICU, I saw it more times than I care to remember. But, I also saw the joy they had when one of their babies was discharged and able to go home with their family. You could see on their faces how much that motivated them to keep going.

When the day came that Emma was to be discharged, I was nervous because she was going to lose her medical team that could handle any issue that arose without hesitation or uncertainty. I was going to have to pick up where they left off with only about a month of experience and without a team on standby in the next room. But during her last twenty-four hours in the NICU, I stayed with her the entire time and she was able to do something she had yet to achieve before then - she drank all of her thickened breast milk by bottle without having to be tube fed any of it. She showed me she was strong enough, with the support I gave her, to come home and start living her life with me. I believe it was her strength coupled with the support of her Nurses that made us such a great team. Without both, the doubt I had that we could duplicate such a feat every day moving forward would not have instantly melted away when I walked her into her home for the first time and told her she made it. 

So I want to say a special thank you to the NICU Nurses at Medical City Children's - you have touched my heart in a way unlike any other before you. You gave me hope to overcome my uncertainty. You gave me courage to overcome my fears. You gave me skills to overcome my insecurities. But most of all, you gave me the time to heal and the confidence to be a better mother than I thought I could be. Emma and I are both better off because of you.

September is Hydrocephalus Awareness Month!

Before I had Emma, September was just another month to me each year. It was the month before my birthday, but nothing really all that special. Now, as the leader for the Dallas Hydrocephalus Association (HA) Support Group, it is the month that I focus on creating awareness in my local community as well as raising funding for much needed research. HA is currently the largest non-profit group focused on raising awareness and funding for research to find a cure for hydrocephalus in the world. An example of what they have done with funding so far is come up with a new treatment protocol that reduced the infection rate in shunt related surgeries by thirty-five percent. 

This year, I am participating in the Second Annual Hydrocephalus Association WALK in Houston on September 21st as a virtual walker. I won't be able to make the trip down to Houston this year for the WALK, but I will be walking at the same time here in Dallas. I've set a goal of $957 for this year as that is how many days old Emma will be on the day of the WALK. Each year, we'll up our goal to how many days old she is that year. If you would like more information about this event, you can visit my event website here.

In an effort to inform others about hydrocephalus, here is some basic information:

• Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities of the brain called ventricles.
• 1 to 2 out of 1000 children are born with hydrocephalus. This number does not include those that develop it from brain bleeds, stroke, tumors, meningitis, or injuries; nor does it include those with Normal Pressure Hydrocephalus (NPH).
• There are over 1,000,000 Americans currently living with hydrocephalus.
• There are over 40,000 hydrocephalus related surgeries in the United States costing over $1 billion dollars annually.
• Fifty percent of shunts fail within the first two years requiring revision surgery.
• There is NO way to prevent or cure hydrocephalus.
• Over the last 50 years, there have been no significant improvements to the treatment options for hydrocephalus.
• Currently, there are only two treatments for hydrocephalus - placement of a shunt or Endoscopic Third Ventriculostomy (ETV). Both are brain surgery.

In addition, Emma and I have been featured in a local newspaper to help educate those around us about hydrocephalus. I would like to thank the people at the Cross Timbers Gazette for taking the time to get to know both of us and helping us share our story to help raise awareness in our community. Here is a link to the article, but if you are in the area and get their paper, be sure to check out the front page!

HA also has a new post about how you can help. Please take a look and do as many as you can (some are as simple as learning more about the condition and changing your Facebook cover photo for a month). How will you make a difference this month?

Amazing weekend

This past weekend was wonderful. Saturday morning was the second Dallas Hydrocephalus Association (HA) Support Group meeting and there was a wonderful group including a couple all the way from Houston - the Houston Support Group leader and a Houston WALK co-chair! It was great getting to meet several people who I had only been in contact with via email and Facebook previously. That evening, my neighborhood was having a little block party so Emma and I went out and met everyone. I'm loving my neighbors and am even happier that we moved.

Watching Mommy getting things ready for the Dallas HA Support Group Meeting

 

Add to that, this weekend was the Belgium Formula 1 Grand Prix, and Emma and I have been without cars going "VROOOOOM" for far too long. I was excited to wake up Sunday morning as I had a planned snuggle session with Emma to watch the race at 7AM. She woke up before the race around her normal time and started her morning routine of singing "Head, Shoulders, Knees, and Toes" as well as "Twinkle, Twinkle Little Star" along with a few others. I love listening to her in the mornings for a few minutes before I go in and get her just to hear all the wonderful things she is saying. But then she said something I hadn't heard her say before that lit me up like the Griswold's house on Christmas Vacation. When I heard the words, "I love you, mama" come out of the monitor, I couldn't contain myself. A couple seconds later, during my little happy dance in bed, she said it again! I jumped out of bed and went in to tell her how happy she made me.

After we ate breakfast, we sat down and proceeded to watch Formula 1 qualifying before the race. After qualifying, Emma sat on her potty for about ten minutes with no sounds other than the both of us singing. This is a rather recent new adventure as her first official day of "potty training" was Thursday, August 22nd. Emma has been saying "change" for getting her diaper changed (mostly after she had filled one up) for some time now. In an effort to help her understand a warning instead of a notification is preferred, we have started sitting on her potty twenty to thirty minutes after meal times in hopes that we'll catch her in the act so she can understand the goal. Since we only just started a few days ago, I wasn't expecting much. Once she was safely back in her diaper, we went back to the living room and started the race. Emma asked for juice around 9:50A, so I gave her about eight ounces. She guzzled that down quickly and happily asked for more. I gave her an additional five ounces which she almost finished.

Part way through the race, I realized she hadn't gone potty since I got her up that morning - and I knew with the milk, cereal, and juice in her system, it was only a matter of time. We took a break from the race and went back to her potty. To my surprise, she went pee-pee a little!!! I think the sound surprised her a little as did the fact that she didn't feel the warmth like she would from her diaper. It may have been only a little, but it was a BIG step for Emma and I was so proud! At the end of the ten minutes, we went back to watch the rest of the race. Shortly after we got all cozy, the warmth returned. When I asked her if she went pee-pee, she giggled. I changed her diaper only for her to go again before I could even lift her up off the table. I looked at her and asked her again if she went pee-pee. This time she whispered "pee-pee," and giggled again. Such a little stinker.

We finished the race and the rest of our weekend with a new warmth in my heart. She is growing up so much and making me so proud every day. I love my little munchkin!