Olivia

I had been betrayed by my own body. I was her mommy and I was the one that was supposed to protect her and keep her safe. She was not inside of me anymore; it was out of my control. Olivia Jane was born 14 weeks early.

She was in a plastic incubator with machines breathing for her and drugs to help her stay alive and tubes in every part of her body. This was not supposed to be happening. I can remember the first time I approached the NICU. The double doors swung open and the strong, distinctive odor of the nursery was overwhelming. It was like a combination of disinfectant, medication, formula, etc. but it is a smell that lingers in my mind, one that carries the struggle of life straight to your soul.

I cried so hard the first time I saw her in the NICU. The pumping and swishing sound of the respirator pounded in my head. The oxygen was turned up as far as possible, and the respirator was turned up as far as it could be. The rhythmic sound of the monitors beeping as they made a visual record of her heartbeat, blood pressure, and oxygen intake and the sight of her tiny chest as it swelled with the much needed oxygen is something that will forever be embedded in my mind. Her tiny little eyes were covered by the smallest pair of foam sunglasses to protect her from the bright blue light which shined down on your sensitive, almost transparent skin for your jaundice. Her legs were so tiny like the size of a Barbie doll almost. Her skin was so transparent but with almost like a leather texture to it. Her face was so tiny accompanied by the tiniest little features. All I could see of her nose was the very end because it was surrounded by the tape which held the respirator tube in place inside her mouth. The view of her chin was blocked by the width of the respirator tube. It’s a never ending roller coaster ride in the NICU.

Olivia had to have heart surgery at just 10 days old to close a hole in her heart. Then just the day after that surgery I was told Olivia had to have a test to check for bleeding on the brain. Babies that are born that prematurely have a very high risk of brain bleeds because the tissues in their brain are extremely sensitive.

Olivia had grade three brain bleeds on both sides of her brain. These are the most unpredictable brain bleeds because they can go either way. There are only four levels of brain bleeds. Level 3 can affect certain parts of the brain but then again there is a chance they can do nothing. You never know what will happen. It can stay where it is, or it can progress forward, and that would cause her brain to swell.

They told me they were going to see if the blood went away before any drastic measures were taken. Olivia’s brain bleed was in the ventricles of Olivia’s brain, which is in the back of the head–brain stem area. The doctor couldn’t tell me at that time what that meant for Olivia. The only good news was that the bleeding had stopped! Thank you Jesus! I was praying to God that her little brain and head did not swell; the bleeding had stopped but I was told that with stage 3 – I would just have to wait and see what her progress would be. The doctor told me that the brain can sometimes reabsorb the blood back into the brain.

I was so scared for her. I remember going home that afternoon completely exhausted and I just fell to the floor in her room and lost it. I clung to her rocking chair and screamed. I was always told not to but I began to ask God why? What does this mean? What is going to happen to her? Why is this happening? What did I do wrong? I will never be able to explain the heart wrenching pain I went through. It is the worst feeling in the world to be a mommy and be completely helpless.

The day after Thanksgiving I was told that Olivia had fluid on her brain. Her head had started to get a lot larger over the past few days and the doctors were concerned. They performed a spinal tap to see if they could get any fluid off but only got 2.5 ml. Dr. Pickett; the neurosurgeon said that he would have liked to get more. So he decided to come back and try to pull fluid straight off the brain, but first they wanted to do another ultrasound to make sure the bleeding had not gotten worse. Dr. Pickett decided to put a temporary shunt in her brain because she continued to have CSF build up. He couldn’t do a permanent shunt because she didn’t weigh enough at the time and that type of surgery can be very risky and her belly was not big enough to hold all of the tubing needed for the fluid to drain.

The temporary shunt would allow the CSF to flow into a tube from the ventricular and into a balloon like reservoir. From there they could tap the reservoir instead of tapping the brain because tapping the brain is very dangerous. When Dr. Pickett felt she was strong enough to undergo the permanent shunt surgery he scheduled it. It was only a few days before my birthday. The day before they had to stop her feeds again to give her another blood transfusion before the surgery. They immediately started her fluids since she was not going to be able to eat any time soon. I hated this so bad. I just couldn’t stand the fact that she was going without eating. I didn’t sleep a wink the night before her surgery. I stayed at the NICU with Olivia until the wee hours of the morning went home to get her sister up and taken to daycare and came right back for her surgery. I just prayed at her bedside the whole entire night.

Then once again I walked with her down the hallway that led to the OR elevators. I rubbed her swollen little head and kissed her and whispered mommy loves you baby. And off she went! It broke my heart to see her like that. She had an IV in each foot and she was back on the ventilator. It was so hard to do this again and this time seemed to be that much harder. It will never be easy to hand your baby over to someone and just trust that they will take care of her. After the surgery Dr. Pickett said that her surgery went well and once again it was just going to be a waiting game to see what the next few days hold for her. That had begun to be what my life was all about, waiting and hoping and praying every second of every day for this beautiful little miracle. They had to shave her little head and the nurse saved her hair for me. It was her very first haircut. I put it into her scrapbook at home. The next day her head circumference had went down 1cm but I almost didn’t recognize her because of all the fluid built up on her. She was extremely puffy and swollen; she had gained about 260 grams from all that fluid.

I remember thinking how awesome that it would be if that was real weight and not fluid. The nurse told me they would slowly take her off her pain meds but the sooner the better because she had been so doped up she was not breathing at all on her own, she was just riding the vent. She had another blood transfusion two days after surgery. I could not stop thinking how strong my baby was. She had already been through more in her one month of life than most people do in multiple lifetimes. She was a fighter and had one of the strongest wills I had ever seen.

She was doing so well, but she started swelling again. They drained fluid from her head but it soon began to collect fluid again. I was so upset. I kept thinking how scary this was going to be. Not just the surgery, but the thought that she would have to have this foreign object in her head for the rest of her life. This device would be responsible for keeping her brain from swelling. It was very overwhelming but I was also very thankful that God placed people like Dr. Pickett on this earth to take care of our little angels like this. The next day Dr. Pickett came in again to tap Olivia’s head to drain some more fluid and as soon as he tapped it more filled in. He was able to get 25 cc’s off but it is still full. So I was told Olivia would be having her surgery to get her VP shunt the next morning. He told me that he would take the temporary shunt out and replace it with a permanent shunt that had a tube attached to it. The tube would be placed down the side of her neck and another incision would be made on her chest to guide the tube into her abdominal cavity, where the fluid would flow and be reabsorbed by the body. He told me she would go back into intensive care while she recovered from all of this.

Olivia has had two more shunt revisions since those days in the NICU. The first shunt revision she had was when she was two years old. The protein that her brain naturally produced had clogged the catheter and caused a blockage. So they went in and replaced her catheter with a new VP programmable shunt this time. She then had another shunt revision just a few days after Christmas in 2016. This time the tubing had become dislodged from the catheter and he had to replace the catheter and all of the tubing leading into her abdomen.

It has been seven years since Miss Olivia came into this world 14 weeks early. Olivia is not a baby anymore. She has grown into “Mommy’s little Punkin”. Through all of her therapies, she has acquired so many skills and now has the ability to open doors that will lead her over new horizons. I have never seen a stronger little girl in all of my life. In the years to come, Livi will learn about the battle that she fought and overcame. I know that she will be filled with love and appreciation for each individual who prayed, worked, or gave a donation to her cause. Olivia will always be a living testimonial for the miracle that she is. God can and still does work miracles today. I have living proof of that each and every day! I can’t thank God enough for choosing me to be her Mommy. I feel absolutely blessed; undeserving of such a blessing at times, but forever grateful.

---

Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

For questions, email: communications@hydroassoc.org with the subject line “Share Your Story”.

Become a Grassroots Advocate for Hydrocephalus today! Visit our Advocacy Action Center.