Tag Archive | neurosurgeon

Preemie Christmas Part 10

Having a cold can really derail things. 

On the 10th day of Christmas, the NICU gave to me: 10 specialists a-knocking, 9 dads kangaroo-ing, 8 moms a – pumping, 7 monitors chiming, 6 nurses charting, 5 needle sticks, 4 brain surgeries, 3 minute scrubs, 2 blood transfusions, and a micro preemie in an isolette. 

Preemies are often “followed” by various specialists in the nicu. Depending on their specific health concerns, some babies could be followed by several doctors in addition to the normal neonatologists. 
Little Miss Minion had a very diverse medical team looking after her during her 3 months, so get ready to meet them! 

1. Neonatologist: a doctor who specializes in preterm/newborn babies. These are the main doctors of the NICU. Every baby in the nicu is followed by the neonatologists. 

2. Respiratory therapists. These people are assigned to babies who are using any kind of breathing assistance, whether it’s a ventilator, CPAP, or cannula. They come in periodically and check the settings, adjust hoses, and generally make sure that everything is working perfectly. 

3. Physical therapists.  Even in the nicu, physical therapy is a big deal. PT is there to create a plan to keep baby’s muscles developing properly. Babies in utero have the resistance of the womb to push against, while “outside babies” have nothing but the special beds of the nicu, which aren’t quite the same. PTs are also the main players in keeping the baby from developing a flat head and/or torticollis, which is imbalanced neck muscles. 

4. Occupational therapists. This one threw me a little at first. What could a Preemie possibly need with occupational therapy? Turns out, they serve a pretty important purpose: setting the plan for baby to learn to use a bottle. Many preemies find bottle feeding to be easier than breastfeeding, Little Miss Minion included (see my previous posts about the joys of pumping). The occupational therapist determines the best position for each baby to feed in, the size of bottle nipple, and they pin point the stress cues that each baby exhibits during a feed. Little Miss Minion was fed by “pace feeding,” which is when the baby is propped up like they are sitting in a chair and the bottle is only slightly inclined. This allows the parent to control the flow of milk. She used an Ultra Preemie nipple for several months before graduating to the regular preemie nipple, and then FINALLY the regular newborn nipple. 

5. Opthalmologist. This is a medical eye doctor. Many micro preemies develop ROP, or retinopathy of prematurity. This doctor’s job is to monitor eye development and see if ROP is occurring or if other issues are happening in the eyes. 

6. Pediatric neurologist. This is a doctor who specializes in the workings of the brain. They make sure that the brain is functioning correctly, that the messages are being transmitted and received. This doctor can easily be confused with…
7. Neurosurgeon. This doctor also specializes in the brain, but in the physical function of it. In Little Miss Minion’s case, the neurosurgeon monitors her hydrocephalus and makes sure her shunts are working. 
8. Lactation specialist. This is a person trained to help new moms breastfeed or pump. 

9. Nicu follow up team. This is a group of nicu personnel who test and measure the progress that the preemie makes once they graduate the nicu until they turn 2 or 3. 

10. Pediatrician. This is the doctor that the preemie will see once they graduate. 

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. 

1 Month Adjusted

Yesterday was Little Miss Minion’s one month adjusted birthday! Today, she gave us two gifts: we each got our very own real smiles from her, and she kicked herself over from her stomach to her back.

I took her surgery bandage off today. My friend M is a nurse and said the tape would come off with baby oil. I could have sworn we had some, but we don’t, so I used sesame body oil instead. It took about 10 minutes and she smells wonderful. The incision looks pretty similar to the old one. It’s healing really quickly.

We’ve got another big week of appointments coming up. On Wednesday, her early intervention team meets to discuss her therapy needs. Right now, she will just be getting physical therapy. On Saturday, she has a pediatrician follow up. On Monday, she has a neurosurgeon follow up. On Tuesday, she has another physical therapy follow up from the hospital. I’m going to need a personal assistant just to keep these appointments straight.

Shunt Revision

Shunts have a 30% failure rate during the first year. It looks like we are getting ours out of the way early.

I took Little Miss Minion to the pediatrician yesterday because she was hysterical for most of the day. I figured that she had an ear infection and those are a big deal with shunts. She had also been doing this thing with her eyes called “sunset eyes.” This is a term used for when a person’s eyes look downward and appear wider than usual. Picture surprised eyes, looking down at your feet with your head facing straight ahead. Pupils are in line with the bottom eyelid. This is a sign of pressure within the skull.

The pediatrician sent us to the emergency room of a children’s hospital  (not our previous one) to get checked out. Apparently our usual hospital doesn’t have a pediatric neurosurgeon on call.

I’ll try to keep the language here PG, but the rest of the night was an absolute shit show. LMM was fine the whole time-this was an issue between us and the medical staff at the hospital. As you are all aware by now, she was born at 28 weeks gestation. This means that she missed out on the entire 3rd trimester antibody transfer, which means that she has a compromised immune system. We were told during our NICU stay that she is highly susceptible to infection and that she needs to not be in public places, especially once cold/flu/RSV season begins. Any kind of respiratory infection will send her to the hospital and will probably require intubation (breathing tube/respirator).

We got to the ER and the first thing I see is a little kid coughing. Luckily, the triage nurse put us in an unused office to wait, since she is a Preemie. From there, we were admitted to the ER and got several scans done. They did an x ray shunt series, which takes x rays of her head, neck, chest, and stomach to make sure the shunt is positioned correctly. They did an MRI to see the exact location and position of the intake end of the shunt, and they did an ultrasound through her fontanel  (the soft spot on the top of babies’heads) to see the fluid levels within her ventricles.

After we were admitted to the hospital itself, we were taken to the Neuro floor. Well, we were told it was the Neuro floor. We were taken to our room and were shocked to find that we had a double room with a toddler (maybe 3-4 years old) and what appeared to be the entire extended family.

Little Miss Minion has only been to 4 places in her entire life: the NICU, our house, her pediatrician’s office, and my mom’s house. The concepts of isolation and quarantine were drilled into us at the NICU, and for good reason. She can escape the Hazmat bubble when she’s bigger and her immune system has developed more.

We talked to the nurses, who brought us the charge nurse. None of them seemed to understand the concept of prematurity and immunity problems. It was shocking. It took an hour and a half from that conversation to speak to the on call pediatricians who were following her jointly with the neuro team. We explained the situation to them and they seemed to not really understand the severity either. They managed to get us an empty patient room though, around 2am. We refused to leave her in the joint room with the family reunion going on, so we holed up in a consult room and planned on taking turns sleeping in her patient room, since her nurses told us we couldn’t sleep in the consult room. She had an IV port placed in the ER, and during our 5 hours in the consult room, no one came in to check on us or to flush her IV. If you don’t flush it, the blood will clot and ruin the IV.

After we were moved into a private room, our nurse pretty much ignored us. She came in once to check blood pressure, couldn’t get a good reading, said she’s be back, and never did. We were forced to wrap LMM in adult sheets because there were no pediatric blankets to be found. Her IV started leaking at some point, probably because it hadn’t been flushed. When they hooked up the fluids, they commented about how sluggish it was. I resisted the urge to tell them it was probably because no one flushed it. We also found out that the floor we were on, which we were told was a neuro-only floor, also had general pediatric patients on it. This means kids with actual illnesses, not just neuro issues. Kids with coughs, colds, runny noses, etc. Contagious things.

The empty room we were moved to had an isolation cart outside already. The nurses this morning assumed she was in isolation, and we haven’t corrected them.

What we’ve learned from this experience is that we will never return to this hospital. We will need to figure out how to arrange care for her at “our” hospital because the compete lack of common sense among 99% of the doctors and nurses is absolutely unconscionable. We were told during NICU discharge class that being a nicu grad is a big deal, medically. They told us that when we go to the pediatrician office, we are to tell them about her nicu stay and be placed in an exam room to wait or to go to the well baby room. We were told that she needs to not be in day care. Don’t take her to public places, like restaurants, grocery stores, the mall. Limit her exposure until she’s big enough and strong enough to handle it. I still cannot believe how we were treated here, how no one seemed to understand how big of a deal this is for her.

When we go back to her pediatrician, I will be getting a letter and/or a note made in her chart that she is to be isolated from other patients and their families. I don’t understand how we were told, and told often, about the need for isolation during our nicu stay and then have her placed in a room full of strangers. I will also be writing letters to everyone I can think of so that this doesn’t happen again to us, or to the family of any other preemie.

Her surgery went well. We can go back and see her in a few minutes. Neurosurgeon said we could be out tomorrow.

Another Weekend

The neurosurgeon follow up went well. He snipped the ends of her stitches so they will come out faster, but they could take another month to completely dissolve. Our next follow up with him will be around Thanksgiving. They will do an mri to make sure the shunt is still working as it should.

The next appointment is Monday evening. This one is a physical therapist from the early intervention program.

Tummy time today was impressive. She can push up and lift her head, looking around. She’s started moving her arms more, like she knows she needs to use them to crawl. She can kick off very well against our hands and propel herself across the mat with just her feet. When I’m working, I keep her loosely strapped on my chest so she can build her arms up.

We bumped her volume up to 90 mls tonight. She’s been finishing 80 pretty consistently, and she’s been waking herself up about half an hour before feeding. We think she’s ready for a little more. This will make mixing up her milk easier, since the recipe is in units of 90 mls. She gets a protein fortifier for extra calories and protein (shocker) and rice cereal for her acid reflux. The rice thickens the milk a little, so it stays down easier.

Hopefully the combination of tonight’s bath, which she thoroughly enjoyed, and a little extra milk will help her to sleep better tonight than she did last night. It’s now about 9pm, and I was awake from midnight to 2am, and from 4am until now. There was a 45 minute nap in there around 3. We all need sleep! 

Appointments Everywhere

For being 2 weeks old adjusted, Little Miss Minion is a very popular girl. This week, she has an appointment with her neurosurgeon to check her shunt and make sure everything is working correctly. Next Monday, she will be having a visit from her physical therapist to assess her needs and observe her progress. In a couple weeks, she will have a pediatric neurologist appointment and a NICU follow up occupational therapy appointment.

All of these specialists are looking at her to see if there are any issues that we need to work on. Having hydrocephalus and the shunt, in addition to being so early and so small, puts her at a slightly higher risk of having fine or gross motor skill delays or developmental delays. Her chances are fairly low, given the reasons for the shunt and the fact that she was born early because of preeclampsia and not some structural issue that impeded blood flow or oxygen. The specialists are here to catch any issues early and provide ways to correct them before they become problems.

We’ve increased her food to 80mls. She seems to be handling it very well. She gets reflux medicine twice a day and that seems to be helping with her general comfort level and her behavior during feedings.

Her bath the other day went well. She likes the feeling of having her hair washed and rinsed–but who doesn’t? She hadn’t felt water before, so it was fun to watch her experience it. I wrapped her in one of her hooded towels to dry her off and she just laid there cooing and looking around.

She’s pretty much adorable.