The Adored Abode

We welcomed our son, Jack, late last March and our lives have not been the same since. He is the sweetest and usually happiest little guy, who just turned one year old! We love him to pieces. Adjusting to life with two kids comes with its own challenges, but we added a few more to the mix with medical complications diagnosed after Jack’s birth.

This is the story of Jack’s birth and diagnosis of hydrocephalus. In case you aren’t aware, this is what hydrocephalus is, from the National Institute of Neurological Disorders and Stroke: “Hydrocephalus is a neurological disorder caused by an abnormal buildup of cerebrospinal fluid in the ventricles (cavities) deep within the brain. This excess fluid causes the ventricles to widen, putting harmful pressure on the brain’s tissues. Hydrocephalus may be present at or shortly after birth, or may result over time from damage or injury”.

I debated whether or not to share our story, but ultimately this is something many other families go through and I want to share to give other families hope. I’m also writing this for myself, writing is a helpful way for me to process and I want our story documented for us.

The way everything unfolded truly feels like things happened in a way that only made getting his diagnosis happen faster, which in the end is a good thing. At the time, it did not feel that way at all.

Jack’s Birth Story

In utero Jack was diagnosed with a small brain cyst in his fourth ventricle. We met with neonatologists and neurologists prior to delivery, and ultimately they said Jack will lead the way and he will tell us exactly what he needs and what his abilities would be, because the impact on his brain was and still is uncertain. We had a lot of uncertainty about what life would look like for him and for us, and we chose to *try* to push our worries aside and focus on being excited, though this was very hard. We had extra weekly monitoring throughout my pregnancy and before his delivery, but everything looked okay aside from he was tiny and also had fetal growth restriction, which was another reason for extra monitoring.

I was induced at 37 weeks and after a morning of Pitocin and not much progress at all I was starting to feel like his labor would be slow. I decided to go ahead and get an epidural around lunch time because I was at a higher risk of needing a c-section due to his conditions and it felt like it was going to be a long day without one. Right around when I was getting the epidural things really started heating up and contractions became intense. I felt like things were changing fast and so did my nurse, which made getting an epidural placed tricky and the first one failed, which was a very, very weird feeling and left my back very sore.

Right away I knew the second epidural wasn’t fully effective (I had one with Leo and this time I could feel almost everything and could still move almost like normal). It didn’t matter because things progressed quickly during and after my epidural placement. My nurse called my OB, who literally ran across the hospital from her office to get to L&D. Because of Jack’s known conditions and concern he would need NICU care the NICU team of nurses also came rushing in. Everything felt like a movie. My OB arrived and Jack came into the world very soon after. He was bigger than anyone predicted at 5lbs 1oz and 19 inches long! He came out crying (thank you, thank you!) and passed all of his tests with flying colors. He was breathing room air and needed no extra monitoring, which was truly the best case scenario for which we could have hoped.

We ended up spending an extra night and day in the hospital because he was having feeding difficulties (with a bottle), his bilirubin levels were high, and his blood sugar was low. During this time he had a routine ultrasound of his head to check and make sure the size of his ventricles looked okay post delivery (because of the brain cyst), and they did, but the radiologist noted he had a grade III brain bleed in his ventricles, the cause unknown. At this point no one made this sound like too big of an issue, which in hindsight feels strange – I wish we had at least been told the risks that come with a brain bleed. He was doing okay so we’d just keep a close eye on him. Jack didn’t end up in the NICU right after birth at his birth hospital, but he did have what was called “special care” where he had his own NICU nurse assigned to him and monitored him from our regular recovery room. His feeding slowly got better (still a challenge, but he was eating the minimum-ish), his blood sugar stabilized and his bilirubin levels came down.

Going Home (the first time)

We were discharged from the hospital late Thursday evening and had a pediatrician appointment the next morning. At his pediatrician appointment Friday morning we were told he needed another blood draw to check his bilirubin levels so off to the children’s hospital for labs we went. Because of the brain bleed the pediatrician also scheduled an MRI for Saturday morning to make sure there were no changes (we are so, SO thankful she had the foresight to schedule it as quick as possible).

Later on Friday our pediatrician called with the bilirubin results and said Jack’s levels had spiked again and he needed to be admitted to the children’s hospital for bilirubin light therapy, likely for 1-2 days. At the time this felt devastating and hard. She called us around 5pm that day and Nathan dropped Jack and I off to be admitted at the hospital by 8pm. We were so excited to get Jack home, only to be home for less than 24 hours and back in the hospital again.

Light therapy did the trick and Jack’s bilirubin levels came down nicely, and I got a taste of what it was like be admitted to the hospital with a child, which admittedly was very easy compared to some of the things we would face in the next few months. Because we were already at the hospital our care team worked with radiology to reschedule his MRI for after he was discharged from light therapy Saturday evening. I packed us up from the hospital room and we went straight down to radiology to get his first MRI. It all felt nicely timed and I had coordinated with Nathan to have him and Leo pick us up from the hospital after the MRI.

Jack’s First MRI & Hydrocephalus Diagnosis

For many, many reasons I wish Nathan was there with me, but it was very hard to hand my brand new teeny baby over to a radiology tech for an MRI. It was quick, maybe 5 minutes, because newborns don’t move much and make MRIs easier. But as soon as the tech brought him back into the waiting room I knew something was wrong. She kept holding Jack and handed me a phone and said the radiologist wanted to talk to me.

I knew this wasn’t good. It is rare, almost never?, that you talk to a radiologist yourself right after a scan. The sweet man very calmly told me Jack’s ventricles were very enlarged and had changed significantly since his ultrasound after birth. He had developed severe hydrocephalus (likely due to the brain bleed after birth, but also could be due to or worsened by his cyst in the 4th ventricle) and he was 99% certain he would need a brain shunt placed as soon as possible. He said because it was Saturday night he did not want me to go home or have to wait for a call from an on-call neurosurgeon, and instead he wanted me to walk straight to the ER. Thank goodness the tech was still with me. I immediately went into some sort of shock and felt paralyzed. She asked me if she could call my husband. I managed to call and get some sort of gibberish out to Nathan that he needed to come inside the hospital and that we weren’t leaving and instead going to the ER.

The radiology tech pulled our wagon of bags and I carried Jack as I sobbed. We walked into the ER and this was how I first learned that hydrocephalus is indeed an emergency. In a room full of people waiting to be seen, we bypassed the line and were immediately walked back to intake and then a triage room. Nathan (and Leo) arrived and everything became chaotic trying to understand what the nurses and doctors were doing while having a toddler in the room. Thankfully I also managed to call my mom and she was already on her way to pick up Leo. After Leo left things got a lot more intense and we are so, so glad he wasn’t there.

It was apparent the ER was very concerned with Jack’s situation. He was SO tiny (less than 5lbs at that time) and they kept saying they didn’t have the right stuff for his size and needed to get things from the NICU. They moved us to a different room with an infant warmer because he was way too cold – likely a combination of the MRI room being really cold and hydrocephalus (as we later learned his body temperature dropped as a means of protecting his brain when he developed hydrocephalus when he was a little baby).

At this point Jack’s vitals starting going all over the place, which was so scary to watch for such a tiny human. He was placed on oxygen and had an IV. Nathan and I stood by his small bedside watching him writhe around, clearly in a lot of pain, and felt incredibly helpless and wanted to vomit. It was in these moments that we weren’t sure Jack was going to make it. Hydrocephalus can cause intense pressure on the brain, which is life threatening depending on the severity.

The on-call neurosurgeon resident came to talk to us and said that yes, he will need a brain shunt placed, but because of his low body temperature they were concerned he had an infection and wanted to wait until labs came back before they made a decision on surgery timing, which was going to be the next morning since at this point it was around midnight.

The nurses and doctors in the ER were fantastic, but it was clear teeny, teeny babies weren’t their speciality. Jack was finally admitted to the NICU around 1am where they got him stabilized and comfortable. Watching your baby be admitted to the NICU is an incredibly overwhelming experience. What seemed like swarms of nurses and doctors took report and assessed the situation. There had to be 12 people around Jack’s tiny bedside area for the first 30 minutes after he was admitted. Lots of poking and prodding, and getting him situated and comfortable. At our children’s hospital parents do not have a place to sleep in the NICU, unless you want to sleep in the very uncomfortable recliner next to the bedside. Our nurse and the neurosurgery team told us to go home and get some sleep, and the neurosurgery team would call us the next morning with the plan.

So we left our tiny, newborn baby, hoping and praying his condition would not worsen over night.

Initial Shunt Placement

We arrived home around 3am, and around 8am the next morning the neurosurgeon resident called and asked how quickly we could get to the hospital. Jack’s labs confirmed no infection and based on his condition they wanted to perform the shunt placement surgery as soon as possible.

We hustled back to the hospital, with bags hastily packed. My parents were still able to watch Leo (and the dogs), which was such a relief. Once we were back at the hospital we saw Jack who was incredibly still and hooked up to all of the monitors. We weren’t able to hold him at this point, so we just stroked his little cheeks and talked to him. We were shown what the shunt device looks like and received a lot of information about the type of shunt Jack would have placed, which was a VP brain shunt. A ventriculoperitoneal (VP) shunt drains excess cerebrospinal fluid into the peritoneal cavity, or abdomen. The shunt device is attached under the scalp, with a tube running down behind the ear, down the neck, and into the abdomen (all underneath the skin).

We signed paperwork to consent and soon our baby was wheeled away for surgery. We were terrified and wanted to vomit (this is a recurring theme – the fear and anxiety was intensely overwhelming). Sending your child off to surgery, especially one that involves a critical organ, is something I wish no one would have to experience. The risks and possible complications were terrifying, but we knew this was Jack’s best chance for survival.

The surgery was fairly quick, he was gone maybe 3 hours, but at the time felt like an eternity. Thankfully, Jack’s surgery was a success and the shunt was placed with no issue. Right away the surgeon was fairly confident because his fontanel was no longer bulging, which meant some of the fluid was draining and relieving pressure on his brain. We wouldn’t know for sure if it was working until he had a follow-up MRI and shunt series X-ray a few days later, but it was a relief knowing he was stable and out of surgery.

Newborns are sleepy to begin with and a newborn after surgery is extra sleepy. He was on IV nutrient supplementation for the first day or so, as he still had a breathing tube. Once his tube was removed we were able to start feeding him regular bottle feeds. His feeding was very slow. For the first few days he wasn’t eating the minimum he should have been. It was very stressful. The team of doctors gave him a few days grace period to adjust to life as a new baby and adjust to life post surgery before determining if he needed a feeding tube or not. In the end he didn’t get a feeding tube as he started eating more little by little. He was in the NICU for a total of 6 days, mostly because he was still having feeding complications. His recovery from the surgery itself went well and his incisions healed nicely and did not seem to bother him. As parents of a newborn it can feel like you might break them the first few days because they’re so tiny, add on a bunch of monitor wires, an IV and both a head and belly incision – and we really felt like we were dealing with fragile material. We eventually got the hang of handling our baby with all the “extras”, it just took time.

By some miracle one of my dear friends who is a nurse at the children’s hospital in the NICU happened to be working the day of his surgery. She tried to check on us as much as she could and made sure we had anything and everything we needed. She is a literal angel and it was so comforting to have a close friend nearby who knew what was going on and understood all of the medical nuances. My sister-in-law also worked at the hospital at the time and was able to come visit the next morning when she worked. She loved on Jack and brought us goodies, and it gave my soul a breath of fresh air. It felt like such a huge blessing having people we love work in the hospital where our baby was admitted.

Going Home (the second time)

Finally we were discharged from the hospital! At this point, Jack was about 2 weeks old. We went home, tried to adjust to life as a family of four, all the while being extra paranoid that Jack wasn’t feeling well. The thing with brain shunts, is they can fail and they often do. Some people live their whole life only ever needing the initial surgery to place a brain shunt and never have a shunt malfunction, and others need multiple surgeries throughout their lives due to shunt failures and malfunctions.

In the case with a little baby – a malfunction could look like extra sleepiness, feeding refusal, enlargement of the fontanel (soft spot) on top of the baby’s head, vomiting, and extreme fussiness – which aside from the fontanel are things that are very hard to tell if they are caused by a shunt failure or just some other normal baby reason, like gas and being a newborn! We were on edge because Jack still wasn’t eat much the first week we were home and we couldn’t help to wonder if the shunt was already failing.

The First 6 Months of Life (with many shunt malfunctions)

It turns out we were right to be concerned Jack’s shunt was failing. A mere week after he was discharged it was clear to us he was having his first shunt malfunction. It was Easter Sunday (2023). He seemed extra lethargic, refused to feed, and loud noises bothered him (he would wince like he was in pain if Leo yelled or the dogs barked).

We are very fortunate that both Nathan and I’s parents live close by. Nathan called his mom and his parents came over to watch Leo and the dogs while we headed back to the hospital in a daze and feeling like we were living a nightmare. An CT scan confirmed the shunt was indeed malfunctioning. He had surgery a few hours later and was again admitted to the NICU. The reason for the shunt failure the first time was the shunt clogged with old blood from the brain bleed he had after birth. The neurosurgeon was able to replace one part of the shunt and confirmed it was working again. This time he was only admitted for a little over 24 hours. Recovery from a shunt malfunction can be surprisingly fast and his feeding had improved enough that it wasn’t something holding him back from going home!

After the first shunt malfunction and surgery Jack went on to have 3 more malfunctions and surgeries in his first six months of life, for a total of five surgeries. The causes of the malfunctions were unclear, other than which part of the shunt was malfunctioning. Shunts can clog, which causes a malfunction, or the device or tubing can break – unfortunately they are not perfect devices and malfunctions are something we will have to watch for the rest of Jack’s life, as he will likely have his brain shunt for life.

Starting with the second shunt malfunction surgery Jack no longer needed to be admitted to the NICU because he was able to breath room air well after surgery and was no longer having major feeding difficulties the bigger he grew, rather he was admitted to the “floor” and was able to recover in an inpatient room where I/we stayed with him. In some ways this was easier than the NICU because we didn’t have to leave him overnight, but in other ways it was harder. When you are staying in an inpatient room you basically have to stay there 24/7, unless you can have someone else come watch your child, or coordinate with a nurse to monitor them while you go grab food, take a walk, get some air, etc. Maybe this gets slightly easier as your child gets older, but I am not sure.

Amidst all of Jack’s surgeries and time in and out of the hospital Leo also went through his fair share of medical issues, albeit less severe. We had multiple colds, 3 ear infections, strep throat, and a fairly severe reaction to an antibiotic, all in the first 2 months after Jack was born. I’m not sure how I kept my sanity. I was so worried about Jack getting sick – you don’t want a newborn sick, but knowing he’d had so many shunt malfunctions I was very concerned about him getting sick and needing surgery at the same time. I was also worried about Leo and all of the illnesses he had in such a short period. Leo was a trooper through it all, though I know everything took a toll on him. During those first few months I wasn’t sure we’d make it, but we did, with much thanks to our amazing village of people who love and care for us.

It Takes a Village

Five brain surgeries in the first six months of life for your baby is terrifying, exhausting and draining as a parent. Spending so much time in and out of the hospital we were really not sleeping much (sleep in a hospital is so hard with overnight checks and monitors, plus add in a child in pain and recovering from surgery with an unpredictable sleep schedule due to anesthesia).

Lack of sleep, having a newborn (and toddler) and dealing with a complex medical condition like hydrocephalus where you are constantly on edge about your child’s health is mentally and physically taxing. We are very lucky to have such a great support system with our families and friends. They supported and cared for us (and Leo and the dogs) when we had nothing left to give. We were given so many meals and food gift cards that we quite seriously did not have to cook for roughly the first four months of Jack’s life, which was truly a godsend. Being in and out of the hospital while caring for another child at home truly takes a village and we are so fortunate to have an amazing one. It is something we are very aware of and do not take for granted.

Jack’s story (and our story) the first six months of his life has changed us and will be part of us forever, and his story will continue to unfold throughout his life. Thankfully, his last shunt malfunction and surgery in September when he was six months old was the last one he has had (so far). At this point we expect, or rather are prepared, that it can and will happen again at some point in this life.

Every time he gets sick or is acting funny, we always look at each other and wonder, is it the shunt? Unless he has obvious cold symptoms, the concern that it’s his shunt making him feel crummy is very high. I am hopeful this will get slightly easier when he learns to communicate and talk, but only time will tell.

Life After Many Surgeries

We don’t know what the future holds for anyone in life, but we are incredibly thankful that our baby boy is doing so well. After his last surgery at six months he started thriving. It seemed like his little brain was finally able to get a break from all the pressure and was able focus on growing. He started scooting, sitting, crawling and then closer to a year he starting standing regularly and using his push walker to walk! We are truly amazed at him and his determination. He gives the best full face smiles and truly loves to make other people smile.

With hydrocephalus, and any medical condition impacting the brain, you don’t know what impacts it will have on the brain and a person’s abilities. We have done a lot of physical and occupational therapy with Jack which has been so helpful. At this point we are very thankful that it seems he really doesn’t need the therapy right now, though we still see his occupational therapist once a monthly for check ins. That may change in the future, but we will let him guide the way on what he needs.

Jack, we love you to the moon and back. This is not a journey we would have picked, but we have learned many things along the way and it has completely changed our perspective on life and just how precious every second is.