Tag Archive | shunt

Two Years

Two years ago today, I was in a hospital bed on day 2 of hopefully many more on bedrest. I was getting frequent visits from my medical team, consisting of nurses, doctors, specialists, maternal fetal medicine, my OB, and two people from the nicu. My OB was hoping to keep Little Miss Minion and I healthy enough to make it to 32 weeks. The maternal fetal medicine specialist (high risk doctor) gave us two weeks in a best case scenario, which would have put us at 30 weeks. I don’t remember who the nicu people were or what their positions in the unit were, but I remember the feeling of panic as they explained all the things they could do if Little Miss Minion had to come early. I remember words like resuscitation, breathing tube, ventilator, developmental delay, and prognosis. I remember thinking that there were an awful lot of people coming in and out of the room during the time the nicu people were with us. 
When Mr Minion went back to our house to grab more clothes and things, since we weren’t expecting me to be admitted the day before, I remember starting to have trouble reading my book. The words weren’t making sense. I read the same paragraph over and over before finally giving up. I sat in my bed, trying to ignore the uncomfortable straps of the monitoring belt wrapped around my stomach. I watched the numbers on my blood pressure readings slowly climb, trying to will them back down. 150/90, 175/95…my prepregnancy readings were usually around 110/70 or lower. One of the nurses came in to check on me and moved the monitor screen to face away from me. With nothing else to look at, I watched the line of the fetal monitoring contraception move. Every jump indicated that Little Miss Minion was doing well, moving around. After a while, the line seemed to be flattening out. I called the nurse, they did a bunch of stuff to try and get Little Miss Minion moving, and nothing worked. They called in an ultrasound team who did a biophysical profile on her. It’s a half hour ultrasound where they count how many times the baby moves and a couple other things. She didn’t move. I watched her heart beat, the only thing that moved on the screen. 

Soon after that, I suspect an urgent  conference of my medical team commenced and a few minutes later, I was on the phone with Mr Minion, who had gotten to the house and wanted to know if I had thought of anything else I wanted. The doctor came in, so I got off the phone. I remember him telling me that my blood pressure wasn’t responding to the magnesium anymore and that Little Miss Minion needed out. Tonight. As soon as they could prep me.
I called Mr Minion and told him. As I hung up, swarms of people poured into the room to get me ready. I continued to call and text people that they were prepping me for surgery and that the baby was coming. And the rest is history. 
Today, I watched my two year old daughter play with bubbles. She ran up and down the hall of our house, played in her sandbox, and drew on an easel with markers. Two years ago, I watched a blue screen descend in front of my face as a team of doctors and nurses saved my life and saved my daughter’s life. I watched as someone held out a tiny, tiny, tiny baby, her head engulfed in a newborn hat that was almost as big as she was, her skin purple and transparent. Everything I had expected was imploding before my eyes. 
Two years ago, our NICU rollercoaster ride began. It started with a stomach churning drop as our one pound, fourteen ounce preemie was brought into the world twelve weeks early. There was another drop over a cliff as she fought off gbs, sepsis, and meningitis. Things smoothed out as we turned the corner of what would be our halfway point. We shot down another towering drop as we found out about her brain damage and hydrocephalus. The subsequent surgery and recovery were bumpy. But then, we could see the exit. Eighty four days after starting this ride, we got off and started the rest of our lives. There are still bumps, potholes, rainy days, and times when we trip and fall. But the important thing is that we get up, dust ourselves off, and KEEP GOING. 
Happy birthday to my daughter, Little Miss Minion. I’m so happy I get to see you grow up. 

NICU Development Clinic

Yesterday was Little Miss Minion’s third NICU clinic. This is the big appointment where she is evaluated by physical therapists, occupational therapists, speech therapists, a neonatologist, and a NICU nurse. We don’t have her official write up yet, but I have the rough numbers. She did really well!

For those who are unfamiliar, her age is measured by two numbers. One is her chronological age-this is how old she is based on her birthday. The other is her adjusted age-this is how old she is based on her due date. So, by her birthday, she is 22 months old. By her adjusted age, she is only 19 months old. This doesn’t really seem like much, but in terms of early development, it is a big deal. 

Her speech was scored at eighteen months, which is a HUGE improvement. This score technically means that she is no longer considered delayed in speech, which is amazing since she’s only had about a month of speech therapy. They gave us some tips on how to encourage her to talk, but said that she is so close to really talking.

Her cognition was scored right at her chronological age, which is also fantastic. This means that she is scoring three months ahead of her adjusted age, which means that she is pretty much caught up for now in that area. With her early birth, the hydrocephalus, and the brain damage she incurred as a result of either the meningitis or the initial pressures of the hydro, this is really a best case scenario. The doctor told me he had to double check her chart to make sure she was the right kid. 

She’s pretty much on track with her adjusted ago with regard to her fine and gross motor skills. They looked at how she walks, how she holds things, whether she can stack blocks, how she picks things up. 

All in all, I think her average score was twenty or twenty one months, which is great, great news. I’ll post more details once we get the official results in a few weeks. But for now, yay for LMM!

Preemie Christmas: Part 4

On the fourth day of Christmas, the NICU gave to me: four brain surgeries, three minute scrubs, two blood transfusions, and a micropreemie in an isolette. 

As long time readers of this blog will know, Little Miss Minion developed hydrocephalus after a bout of sepsis and meningitis. There is no cure for hydrocephalus, only treatments, and those treatments involve brain surgery. When she was about two months old, weighing in at about four pounds, she had her first surgery to place a shunt to drain the excess fluid from her brain. One month later, she had a revision because the shunt had failed. Two weeks after that, she had an ETV procedure to open up the spaces between the ventricles and to create a drain as a backup, and a month after that, she had a second shunt placement. 
Some hydro patients will have only a few surgeries in their lifetime, and some have had hundreds. We are currently 13 months out from her last surgery, and hopefully we will be good for a long time. 

Neurosurgeon Follow Up

We had our semi-monthly follow up with Little Miss Minion’s neurosurgeon a couple of days ago. Every few months, she goes in for an MRI and a follow-up office visit to make sure that her shunts are working and that everything with her ventricles looks good. At our last visit, we were cleared for six months instead of three. At this week’s visit, we were cleared for ONE FULL YEAR!

Everything on her scan looked perfect, and the neurosurgeon even said that this is the best scan she’s ever had. The small area we were watching, near her ETV, is draining properly and has gotten smaller.

So, hopefully, it will be another year until we have to see this particular specialist again. She could, of course, have a malfunction or failure in either of her shunts or the ETV, but barring something like that, she is in good shape!

He also said that the speech delay we are seeing could be due to the PVL (periventriculoleukomalacia–brain damage), or due to just having hydro, or from being a Preemie, or she could just be wired that way. We are still super early in dealing with the speech issues, and she has actually improved a little since we started following the speech therapist’s suggestions. More on that in another post.

 

Hydrocephalus Awareness 


I first became aware of hydrocephalus in July of last year. Little Miss Minion was still in the NICU and I had gone back to work to allow for time off once she came home. I got a phone call from one of the neonatologists telling me that they had done a follow up head ultrasound (standard procedure to check for brain bleeds) and that they had noticed enlarged ventricles. I was told that a specialist would meet us at the NICU that afternoon to talk to us some more about what that actually meant. I immediately went on break and looked up “enlarged ventricles” on my phone. I read about brain damage, developmental delays, seizures, and death. The images that the search turned up were of babies with basketball sized heads. When Mr Minion and I arrived at the NICU and met the specialist, we were in shock. 

The specialist, who turned out to be a neurosurgeon, explained that the meningitis and sepsis that our daughter had survived a few weeks earlier had caused damage in her brain. Along with four tiny spots of periventricular leukomalacia (brain damage), the infections had blocked the third ventricle of the brain (which functions like a drain) and had also caused the brain to either create too much or not absorb cerebrospinal fluid fast enough, causing a buildup of fluid inside LMM’s brain. The only “cure” was to insert a man made drain into her brain: a ventriculoperitoneal shunt (VP shunt). This would become a pathway for excess fluid to drain out of her brain, where it would cause damage, and redirect it into a space near her stomach to be absorbed. 

Our preemie, who weighed about 4 pounds at the time of her surgery, underwent her first brain surgery at just over 2 months old. A few weeks after she came home from the NICU, she needed another. A few weeks later, she had another. And a few weeks after that, she had one more. 90% of shunts fail within the first year. 

Today, you would never know by looking at her that our daughter is a Hydro Warrior. The only physical signs are two shunts in the back of her head, now hidden by hair, some scarring where her ETV was done, and some scarring on her stomach from where the shunt drain portion was placed. All of the tubing is internal. However, we live in the shadow of Hydrocephalus. At any moment, her ETV could close. A shunt could become blocked or broken. She could get a shunt infection. Any of those things would be an emergency situation, requiring an immediate trip to the ER and would result in surgery. There is no way to cure hydrocephalus. There is only treatment. 

One Year Ago: How Quickly Things Change

One year ago today, I was on day two of a three day hospitalization for “brewing preeclampsia” and possible HELLP syndrome. I was 25 weeks pregnant. According to several very detailed ultrasounds, LMM weighed about 15 ounces. I received my first round of steroid shots, to speed her lung development in case they had to deliver her that day. 

One year ago yesterday started off pretty normally. I had done a round of bloodwork to check my thyroid levels again and to see if there was anything going on with some swelling, headaches, and slightly higher (for me) blood pressure readings of around 120/80 (normally was around 105/70). Around 2 pm, I got a call at work from my OB office. I snuck off to the hall to listen to the message, knowing it was probably the results of my bloodwork. When I heard my doctor’s voice on the message, I started swearing. My doctor never personally called me. Her nurse practitioner had always called. “Please give me a call about your blood test results.” I went back to my desk, since I was the only one there that day, and didn’t want the department to be unmanned. I called the office and got the nurse practitioner. She put me on hold while she grabbed my file and then came back on the line. “Ok, Mrs Minion, the doctor wants you to head to the hospital. Your bloodwork came back with some abnormal levels. You’ll come in the main entrance and then to the maternity welcome center. We’ve sent your file over already, so they will be waiting for you.” 

In shock, I went to my boss and told him that my doctor told me to go to the hospital. I grabbed my stuff and headed to the parking garage. I called Mr Minion as I walked, telling him that I was headed to the hospital. I made it to the maternity center and told them I was here. About five minutes later, Mr Minion walked in the door. The drive should have taken him about fifteen more minutes. 

Over the course of my hospital stay, I learned that my platelet levels, the part of your blood that makes clotting possible, were very low. My kidney levels and Uric acid levels were wrong too. My hemoglobin levels were also wrong. I had basically everything that makes up HELLP without the severity. My new high risk team also thought that I would probably end up with preeclampsia, which is high blood pressure and organ stress. They didn’t know if I would ever get officially diagnosed with it, since you have to meet several diagnostic criteria and I wasn’t technically meeting any of them. They didn’t know when it would happen, if it ever did. The hope was to get LMM and I to 37 weeks, the minimum threshold for full term. I would have weekly blood draws, weekly protein tests, and a high risk maternal fetal medicine team. I was under orders to take it easy, and I was able to keep working only because I have a desk job. 

I had no idea that my daughter would be born exactly three weeks after I was discharged. I had no idea that the following 84 days would be spent in a small room in the nicu, watching her learn to breathe, eat, struggle through infection, sepsis, meningitis, and hydrocephalus, watching her be wheeled away for brain surgery. I had no idea I would have to wait an entire day to hold my child, that I would have to wait for permission to hold her again. I didn’t know how enraged I would be to hear a pregnant woman bemoan her aching back and wish for an early baby. I had no idea of the level of jealousy I would feel with other people and their textbook pregnancies. 

I had no idea that I would be hooked up to an IV of magnesium, a substance that would keep me from having seizures due to sky high blood pressure, telling the nurses and the doctors that I would be fine, that we needed to wait because LMM wasn’t ready. I didn’t know that I would be waking up every three hours around the clock to pump instead of breastfeed. I didn’t know she would have four brain surgeries before the age of six months. I didnt know that any sound of beeping would trigger an adrenaline rush to get to my daughter’s side and stop the apnea or bradycardia episode in progress.

Without darkness, there can be no light. 

Slow and Steady

Little Miss Minion had her (almost) 12 month checkup this afternoon. She’s technically only 11 months, but close enough. She is now a whopping 16 pounds, 2.2 ounces, which is 8.6 times her birth weight, and 25 inches long. Her pediatrician said that she’s one of the happiest and social babies she sees, and that she’s very happy with her progress. She went over Little Miss Minion’s stats with me, as always, and she’s right on track. She’s on the regular growth chart now! Usually, we use the preemie growth chart because it adjusts for the slower growth and lower beginning weight of preemies, comparing them to each other instead of full term babies. But this time, we compared her to the chart for full term babies born on her birthday, and she’s at 6.6%! Her head circumference is perfect, which is good news for both brain development and hydrocephalus concerns. Stable head growth is good. 

Upcoming adventures include a March of Dimes walk in a couple of weeks, orthotics, and another neurosurgeon follow up and MRI. The March of Dimes walk will be her first real contact with The Public aka Germ Central. The good news is that the event is outside and the team I’m walking with is her NICU team, mostly nurses, who know all about Preemie Protocol. One of my coworkers and her husband are walking with us, plus my sister is coming! I’m touched that other people want to walk in support of LMM, and for all of the donations we’ve raised for the cause. 

Other than that, not too much else going on in the Minion household.