Mountains to Climb: An Update on Atticus

I want to begin first by expressing our deep gratitude to all of our family and friends who have kept us and our baby boy in your prayers. The love and support we have felt during this trying time has been incredible, thank you.

So then, an update on Atticus!

When I posted last we were waiting on an MRI, so I will start there. Atticus had to be sedated which meant that he had to fast prior to the appointment. At this point because he wasn't quite a month old he would also need to be under observation for 12 hours after sedation. Withholding food from a four week old baby is an incredibly frustrating experience for everyone involved.

On Tuesday, August 11th we drove up to Primary Children's Hospital where we were directed to the imaging/radiology department. They placed an IV in Atticus' hand and I carried him down the hall to the room where they would do the MRI. The nurse then directed me to a chair where I held him while she pushed the sedation drugs into his IV. Atticus was starving at this point so I watched his very frustrated face relax, and then handed his limp little body over to the nurse who took him back to do the MRI.

What you see here is a slice through the center of a ventricle. The fluid is the large white area. They are about 5x the size that they should be.

When the MRI was done we were taken to a recovery room where a nurse was assigned to monitor his vitals for a few hours after sedation. We were scheduled to meet with Dr. Kestle, the neurosurgeon who would be doing the operation should Atticus need it, after the MRI. I was very anxious to feed Atticus once he came out of sedation, but we were told to wait for the neurosurgery team to come meet with us before we fed him, just in case the surgeon didn't want him to eat. Well it ended up the team was about and hour and a half late to our appointment and consequently Atticus hadn't eaten in about 10 hours.

Garrett didn't know I snapped this photo, but I thought it was very sweet. Garrett is running on about 2 hours of sleep and is listening to some study tracks while calming a very hungry baby.

When we finally met with the team, the surgeon didn't even know we were waiting to feed Atticus, and gave us the go ahead. He informed us that he did want to do surgery the next day. We had packed some bags just in case, but it was still hard to process that our infant would be undergoing surgery within the next 24 hours. At this point Garrett and I were still undecided as to which surgery Atticus would get. We had two options, an ETV (endoscopic third ventriculostomy) or he could have a shunt system placed. He was a good candidate for both and both had various risks and benefits. This was the hardest choice either Garrett or I had ever made. One thing I didn't anticipate in becoming a parent was how hard it would be to make decisions, especially when the decisions you make directly impact another person's life in such a drastic way.

Preparing for Surgery

Ultimately after much thought and prayer, we decided that a shunt system would be the best fit for our little boy. A shunt system helps the fluid flow out of the blocked area of the ventricle. In Atticus' case he has a blocked duct that currently prevents the normal flow of fluid and causes his hydrocephalus. The shunt is placed into the ventricle, and a line is run up through his skull. There is a reservoir under his skin on the top of his head that holds some of the cerebral spinal fluid, this is so that if we suspect an infection they can tap into that instead of doing a spinal tap. There is also a small valve which regulates the flow of fluid, and then tubing which runs under his skin from his skull, behind his ear, and down under his abdomen where it drains into the cavity around his gut and is reabsorbed into the body.

We were taken from the recovery room to the infant unit where he was admitted. He fed about three times before he had to fast again in preparation for the anesthesia the next day. Atticus began his next fast at 2:30 AM in the morning and around 7:30 AM the nurses came in to bath him. Sometime after 8:00 AM, we were finally ready to go. The nurses asked if we wanted to put him in the crib and wheel him down or if I wanted to carry him. I replied that I would carry him. We were taken down to a small room where we waited for the neurosurgery team to come and talk to us. We also met my parents there so they could see Atticus before he went in.

The team came in, and reassured us that Atticus was in good hands. I handed my baby over and just like that, he was on his way to surgery. We were taken to the waiting room where we found a small unoccupied office and my dad gave Garrett and I a blessing.  In the waiting room there was a mom of another child with hydrocephalus, his condition however was caused by genetic condition. I later spoke to our surgeon, he does not believe that it is a genetic condition with Atticus because there were no other abnormalities in his brain.

The surgery was fairly short, 1-2 hours, and went very well. We were taken down to OR recovery unit to see Atticus. As much as a tried to prepare myself to see him, I wasn't. I saw his little face, still so groggy from anesthesia, and I broke down in tears. Because he had a breathing tube during the operation his throat had been scratched. I could tell he was trying to cry, but it was more of a scratchy little groan. I remember being very upset at how cold he was and that he wasn't wrapped up very well. If you've ever been inside of an OR, they keep it very chilly and he was naked during surgery. Garrett asked the nurse if I could hold him. They handed Atticus to me and I just looked at his pale little face. He had three incisions, one on the top of his skull, behind his ear, and one on his abdomen. It was difficult to hold an infant knowing he had several incisions, monitors, and an IV stuck to him, but I was grateful I could. The nurse handed me a bottle of cold formula, which he didn't take.

Recovering from Surgery

We took Atticus back up to our room where he was attached to another set of monitors. He was given morphine for the pain, as well as percocet, motrin, tylenol, and a version of lortab for babies. He didn't eat for another 10 hours after coming out of anesthesia, and when he did it was slow going. At this point Atticus had been on IV fluids for over 24 hours, consequently his little body was all swollen with fluids. His recovery went well, with a few hiccups with his oxygen levels and some gas in belly.

2nd MRI Image

After his surgery they did another set of images with a different MRI machine. These images aren't as detailed and don't take as long, which did not require sedation (thank goodness!).  It was amazing to see the difference. Not too much, or too little. They want to see change, but not too quickly.

By Thursday, he was eating enough and wetting his diapers and was discharged. I was pretty surprised at how soon he was able to go home after brain surgery.  Modern medicine is incredible.

Leaving the Hospital

I wanted to make sure we got a "family photo" before we left the hospital. This was such an impactful experience for our little family unit, and while it's not the most glamourous photo I wanted to document this moment.

Atticus just passed his three month mark and I am happy to report that he is doing wonderfully! He will have the shunt for the rest of his life, and will need another surgery at some

Atticus at 3 Months

point to replace to tubing once he grows out of it. Hopefully, that is the only surgery he will need. He has a small chance of infection and a larger chance of blockage, if either of those happen then he would need to have the whole system replaced.

Every situation is different with hydrocephalus, but there is a chance he will have some type of learning disability. Whether that be social, emotional, reading, language, and what the extent will be we really don't know.  We are very hopeful for his future however, and as of right now he is hitting all his major milestones (smiling, lifting his head, eye tracking, etc.). He is even starting to rock (almost roll!) from tummy to back, which is so exciting for me!

We have a follow up appointment scheduled next month where they will do an ultrasound to check his progress and to make sure the shunt is functioning correctly. We are hoping to see a decrease in the size of his ventricles since the last image.

A beautiful talk given by Elder Henry B. Eyring has come to my mind more than once since Atticus was born. "Mountains to Climb" where he talks specifically about faith building experiences. This has been a rollercoaster for our little family, and while I know we may not yet be through all our trials, I know that God has lifted us up and helped us to bear our burdens. I am grateful for the gospel of Jesus Christ, and I know that through Him we can do all things that the Lord would have us do.

"If we have faith in Jesus Christ, the hardest as well as the easiest times in life can be a blessing. In all conditions, we can choose the right with the guidance of the Spirit. We have the gospel of Jesus Christ to shape and guide our lives if we choose it. And with prophets revealing to us our place in the plan of salvation, we can live with perfect hope and a feeling of peace."

                                     - Elder Henry B. Eyring, Mountains to Climb