#GivingTuesday, Health, Hydrocephalus, Kids, Parenting, Thanksgiving, Uncategorized

#Giving Tuesday

 

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.

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Resting with daddy the day before surgery

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…

surgerydiagram

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…

Philippians 4:6-7
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.

ellie-pre-op
Pre-op

 

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Post-op
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Present
Kids, Parenting, Thanksgiving, Uncategorized

FRIENDSgiving And A Two Year Old…

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Today we are not only celebrating Thanksgiving Day but also a birthday!

I can’t believe our caboose is now two years old. This time two years ago I went to my routine checkup at the doctor’s office. Only this time… I didn’t get to leave! I’ll never forget the words that came out of the nurse’s mouth as she checked my blood pressure, “did you run up the stairs when you came in?” “Uh, No…” I told her, why would she think that? She told me that my blood pressure was pretty high and that she would give me a minute to relax and then check it again. After checking it again, she asked me if my blood pressure had ever been high. Again, I said, “Uh, no…why do you ask?” It was in that moment that I was beginning to understand what was happening. The nurse left the room and quickly returned with the doctor, who began asking me a bunch of questions.

Doctor: “Do you feel dizzy?”
Me: “No”
Doctor: “Are your ankles swollen?”
Me: “No”
Doctor: “Do you feel nauseous?”
Me: “No”

I felt normal! Then she proceeded to tell me that my blood pressure was so high that she wouldn’t be surprised if I started having seizures… after that, the only thing I remember was the number 160/100. I could see her talking to me, but I was not really processing all she said. She told me that I was going to go on upstairs to the hospital and have this baby today. “Wait, what…” I said. I haven’t packed a bag, my parents aren’t here, it’s three weeks early I probably need to call my husband! Lots of thoughts were running through my brain. The last thing she said to me was that I could call my husband, but we wouldn’t wait to get things started, so tell him to hurry.

Ok… so I grabbed my cell phone, shaking I called my husband and tried to tell him what was going on. Later he told me I had made absolutely no sense on the phone so he figured he better come to the hospital. My second call was to my parents to see how soon they could get to Fayetteville and finally, I called two of the first ladies I’d met when I moved to Arkansas Wendy and Karla, to see if each could take one of my older children for the evening. After that everything went really fast and our third child, a daughter had come into the world around 4:15 that afternoon.

We ended up having to stay in the hospital for a bit longer than normal until they could regulate my blood pressure. Finally the day before Thanksgiving we were able to go home and finally be together as a family of five. (six if you could the giant dog). I’ll never forget the next day. It was Thanksgiving day and I had bought everything we needed to cook a full Thanksgiving meal. Only, I didn’t really feel like cooking. Daniel stepped up to the plate and offered to cook everything! He said, “just tell me where your recipes are and I’ll get everything ready for a late afternoon meal.” “Hmmmm…” I thought to myself, looked at him and said, “I don’t really have recipes written down, I just do it from memory.”

Now, for those of you that know my husband, you know that he is a process person. Everything has its place, processes are written down and followed exactly in order to always have a successful outcome. And, while at this point he was probably ready to strangle me, he didn’t let it show. He proceeded to pick up a sharpie and write directly on each ingredient how much he needed for each dish. Some hours later, we had a wonderful Thanksgiving Day meal that he cooked all by himself. Love him!

Since that day, I have never cooked a full Thanksgiving Day meal. We have been blessed with wonderful friends (Lee & Greg) that have invited us over to join in and celebrate with their family. I bring the crockpot mac n’cheese (because we’re from Alabama where you have mac n’cheese on Thanksgiving) and everything else is taken care of. What a blessing!!

There are so many things for me to be thankful for; God’s Grace… because I’m a sinner saved by it, my husband, my three kiddos, my parent’s, my sister and her family, Daniel’s mom and siblings (and all of our extended family). I’m thankful for the Lord bringing us to Fayetteville where we have made some really great lifelong friends. As I think back to this day two years ago, I will forever be thankful for the wisdom of the doctors and nurses who helped bring our little caboose into this world three weeks early for both her safety and mine.

Thinking back, I wasn’t ready for number three to arrive when she did, but I quickly remembered that it’s usually not my timing that matters. I’m usually impatient for things I want when I want them and worried when things happen too fast or I feel unprepared. But then I remember the Lord has His own perfect timing and everything is part of His perfect plan for me. So, I am Thankful most for a God that knows my every need and provides exactly what is needed in His perfect time.

Happy Thanksgiving!