November 29th was the Global Day of Giving.
Yes, after you’ve probably spent way too much money on Black Friday, Small Business Saturday and Cyber Monday (not me, unfortunately, I haven’t started Christmas shopping yet) we now have the kick off of the charitable giving season known as #GivingTuesday. We decided to give to a non-profit association that furthers the research, education, and solutions for Hydrocephalus, The Hydrocephalus Association.
It wasn’t until April 21st of 2015 that I even knew what Hydrocephalus was. The afternoon before, I had taken our new addition to the family for her 5-month check-up. Moms, you know the drill… strip the baby down to the diaper, place them on the freezing cold scale for a quick weight and length check and then back to the exam room for a head circumference measurement. Now, I had noticed that my little one’s head seemed a bit larger than normal, but I just figured she would grow into it. Up until now, we had always been fortunate enough to have normal, uneventful routine check-ups at the doctor’s office. It kind of hit me in the gut when the doctor brought out the growth chart analysis and showed me that her head circumference was measuring off the charts. “What does that mean,” I asked? The doctor proceeded to tell me that he wanted us to go across the street to the diagnostic and imaging center where they had scheduled a CT scan. We would have the test done first thing in the morning and they would call us directly with the findings.
I remember feeling numb, not really knowing what to do. Of course, I called my husband and told him everything I had discussed with the doctor while driving home. I called my mom and told her as she and my dad are prayer warriors and man did I feel like we needed some. The next day seemed to take an eternity to arrive. Daniel and I both went in for the CT scan, but when we got there only one parent was allowed to go in the room. Daniel took one look at my face and said, “you go,” God bless that man! Luckily our little one didn’t move an inch so there was no need for sedation. The CT was short, just a few minutes and the nurse said they would send the results to the doctor who would give us a call.
I had no idea how long it would take and trying desperately to keep my mind off of things (right, like I could do that) I took our little one to go walk around at the mall for a bit. We had just made it to the second floor of Dillard’s when my phone rang… it was the doctor’s office calling. I quickly picked up and heard Dr. Ball’s voice on the other end of the phone. He proceeded to tell me that the CT scans confirmed what he had been thinking, our baby girl had a condition known as Hydrocephalus.
Now for those of you who like to break down the parts of a word in order to find its meaning, you would know that Hydrocephalus comes from the Greek words hydro meaning water and cephalus meaning head. The Hydrocephalus Association defines it as an abnormal accumulation of cerebrospinal fluid (CSF) within cavities in the brain called ventricles. Cerebrospinal fluid is produced in the ventricles and in the choroid plexus. It circulates through the ventricular system in the brain and is absorbed into the bloodstream. This fluid is in constant circulation and has many functions, including to surround the brain and spinal cord and act as a protective cushion against injury. It contains nutrients and proteins necessary for the nourishment and normal function of the brain and carries waste products away from surrounding tissues.Hydrocephalus occurs when there is an imbalance between the amount of CSF that is produced and the rate at which it is absorbed. As the CSF builds up, it causes the ventricles to enlarge and the pressure inside the head to increase thus making the head size increase as well.
At this point, I was in “fix it mode”… tell me what to do! Dr. Ball was great, he went on to say that he wanted us to go straight to Arkansas Children’s Hospital in Little Rock (three hours from Fayetteville) he knew that by the time we would arrive we would need to go to the emergency room, so he had already called ahead and alerted the pediatric neurosurgeon that we were coming and paved the way for a smooth arrival. I quickly jumped in the car called Daniel and told him what we were doing and what needed to be done so we could make our way to Arkansas Children’s Hospital. As I had done just a few months back, I called my friend’s Karla and Wendy to once again seek help with the older children for the night until my parents could arrive in Fayetteville the next day. And again, without hesitation or pause, they both jumped in to help as needed.
A short while later we were on our way to Little Rock with our little girl. I think Daniel and I may have held hands the entire ride. Once we arrived they already had our paperwork, but we did have to wait what seemed like an eternity. My parents, on their way to Fayetteville to help with the older kids, stopped by the hospital in Little Rock to see how we were doing and bring us some food. It was good to see their faces and hear their calming voices as we waited to see the neurosurgeon. Finally, we were called back and spoke with a neurosurgeon who had already talked to his superior, Dr. Cai, regarding our daughter’s condition. We did receive a bit of good news, he told us that her case was not bad enough to operate tonight (although by this time it was about 2:00am) that he would have his nurse schedule surgery for the next day.
We checked into a hotel in Little Rock and tried to sleep a little bit. We spent the next few hours in downtown Little Rock trying to keep busy. The nurse called and gave us the rundown of how to prepare, what to expect and told us to be at the hospital at 8:00am in the morning. We were there promptly at 8:00 filling out paperwork and having her vitals taken, all of the normal pre-surgery prep seemed to be happening quickly.
We were taken back into a private pre-op room and dressed little miss in her surgery gown. The surgeon, Dr. Cai came in with his operating room nurse, the anesthesiologist came in… basically, anyone who was going to be in the room with our daughter came into speak with us, tell us what they were going to do and tried to put our minds at ease. Dr. Cai, with the help of his nurse as he speaks fluent Chinese and broken English, let us know that they would put her under anesthesia, once she was asleep they would call us in the waiting room to let us know they were beginning surgery.
The surgical procedure for Hydrocephalus requires the neurosurgeon to implant a VP (ventricular peritoneal) shunt in the ventricles of the brain. After she was under general anesthesia, they would make two incisions, one on the head and one in the abdomen to allow the neurosurgeon to pass the shunt’s tubing through to the abdomen. A small hole is made in the skull, to allow the ventricular end of the shunt to be passed through the brain and into the ventricle. The abdominal (peritoneal) end is passed into the abdominal cavity through a small opening in the lining of the abdomen where the excess CSF will eventually be absorbed. Here is a visual to help you better understand…
I felt good about her surgeons and nurses and felt like I had a good grasp on what was about to happen. BUT, NO ONE… I mean NO ONE can prepare you for that moment when the nurse comes to take your child for surgery. Her nurse wheeled her out of pre-op and we were able to walk with her until we got to a hallway with two doors. She was headed through the door on the left and we had to exit out the door to the right. I will never forget that feeling of complete and total helplessness as we kissed her on the forehead and had to turn and walk away. I had absolutely no control, there was nothing I could do but sit and wait. I think I prayed the entire time. Daniel was calm and collected, which definitely helped me.
After surgery, Dr. Cai came out to the waiting room and said that everything had gone well, that she was in post-op recovery and we would be taken back as soon as she woke up. I called those on the phone tree and texted friends and family that had been praying for us all that day to share the good news. Getting to hold and feed her in post-op may be one of the most special moments I’ve ever had. All that feeling of helplessness had gone away as she rocked in my lap and nursed.
Fast forward to the present. I am thankful to say that she is doing well, happy and healthy and has not experienced any issues with her condition or hardware that will remain in her body the rest of her life. Sure we know that at some point it’s likely she will have to have a shunt revision and possibly more surgeries, but we are thankful that everything has gone so well thus far.
I remember thinking this verse from the time the doctor said “abnormal head circumference” to the evening we were discharged from the hospital and we were once again able to sleep in our own house and hear her sweet little snore in the next room…
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
I was right, I wasn’t in control through any of it… there was nothing I could do to change or help things back a year and a half ago and there is nothing I can do to make it all go away now. But, I know that God was in control back in April of 2015 and He is still in control of the situation to this day.
We are blessed with what we have been given and therefore give joyfully to an association that continues the research to find a cure for Hydrocephalus.
2 thoughts on “#Giving Tuesday”
Such a beautiful recap Jackie! I continue prayers for her from that day forward. She’s such s special little girl with an equally special mom, dad, sister and brother