Shunt Revision #3

Little Miss Minion had her third shunt surgery this morning. This shunt story started two days ago. Mr Minion and I feel her fontanel (soft spot on her head) on a pretty regular basis and we both thought it felt different Monday night. Tuesday morning, it felt slightly more different, so we took her in to the ER to get it looked at. She was acting fine and not really showing signs of pressure, so we caught it very early.

The plan was to have an MRI done yesterday to take a look at the ventricle walls and the third ventricle to decide which of two surgical options would be the best.

In a normal brain, there are 2 ventricles in the center of the brain. These are like water balloons and they are normally slightly full of cerebrospinal fluid (Gatorade for your brain). When she had meningitis  (which is pretty much confirmed at this point by different things that have happened), the infection caused some scarring in her brain tissue, including the wall that separates the two ventricles. Normally, CSF can flow between them, which would allow her shunt to drain both. The scarring blocks one ventricle from draining, so pressure was starting to build up. There was also a blockage, probably caused by the meningitis, in the third ventricle, which is like the S bend in a toilet (for lack of a better description). The two main ventricles would be in the bowl, and then they drain through the third ventricle.

There were two options to solve these problems. The first option would be to place a second shunt. This would mechanically solve the drainage issue, but would create a second area of concern for infection or shunt malfunction.

The second option (and the one we went with, at the recommendation of her neurosurgeon) is called ETV (endoscopic third ventriculostomy) and fenestration (creating an opening). This procedure creates a hole between the two main ventricles, allowing fluid to flow between them (fenestration) and creates a “drain” in the third ventricle to allow fluid to flow out that way. So the fluid can now flow down through the third ventricle and exit around where it should, and the shunt can still drain anything that doesn’t go out that way. There is a valve on the shunt that reacts to pressure, so it shouldn’t drain unless it needs to.

The ETV could negate the need for the shunt, but they don’t like to remove the shunts unless there is a good reason to do so. Plus, there is a slightly higher failure rate with the ETV than the regular shunt at first.

So that’s what’s been going on with us.

85 Days

Today is the 85th day since Little Miss Minion was discharged from the NICU. She’s officially been out of the NICU longer than she was in there.

Last night, Mr Minion and I thought that her fontanel felt a little puffy. This morning when we woke up,  it was still puffy, so we took her in to the hospital to get it checked out. Turns out there is something wrong with her shunt again, so we’re getting an MRI tomorrow and then she’ll probably have surgery to correct it within the next couple days.

We caught it pretty early, so she’s still feeling good. We had a smiling contest earlier. She won.

Shopping Spree

I got to go shopping this afternoon. I got myself some Starbucks, because it’s not every week I get to leave the house.

On the shopping list: 8 oz bottles, cereal, baby spoons, and random household stuff.

Cereal tonight was overall a success. She didn’t spit it out and actually seemed to kind of like the spoon. Very impressed, since she’s only 2 months adjusted.

In addition to her rolling, which she did several times today, she’s gotten quite good at sitting up with just her boppy for support.

I pulled out a bunch of new clothes for her last night, since she’s starting to fit into some of the 3 month outfits. She’s getting so big!

Keep Rolling

Little Miss Minion rolled repeatedly from her stomach to her back tonight. She’s done it a couple times here and there, but this was just like a switch flipped. We were trying to do tummy time and we couldn’t because she kept rolling over.

Her synagis shot was scheduled for a couple weeks from now and I cannot wait. She’ll be getting her flu shot right around then also. Too bad they don’t have something for colds as well.

I’m going out tomorrow for like the 4th time in a month. I’ll be getting all kinds of cool stuff like baby cereal, tiny spoons, and some 8 ounce bottles!  She’s routinely finishing her 4 ounce ones, and they are starting to leak.

Off to Minion bathtime!

Pediatrician Visit: 2 months adjusted

Quick update: Little Miss Minion had her two month pediatrician appointment today. She now weighs 10 pounds, 6 ounces, and is 21.5 inches long. That’s 5.5 times her birthweight and about 1.5 times her birth length. 

She got more shots today, which I’m very happy about. She wailed for about five minutes afterward, which I found interesting because she never really cared when they would place IVs. 

The pediatrician is very happy with her. She cleared us to try rice cereal with her over the next month or so. She’ll start out with a few teaspoons and hopefully she’ll be up to 1/2 cup per day in about a month, plus her same amount of breastmilk feedings. Then we can start her on baby food. We increased her famotidine (reflux meds) a little bit, and the cereal will help with that as well. 

On the way out, I made her next two appointments and confused the heck out of the receptionist. I made her flu shot appointment for next month. Babies must be at least six months old to get the flu shot. Then I made her 4 month (adjusted) appointment for December.  The receptionist kept trying to tell me that was wrong, because of the timing for the flu shot. She finally checked with the doctor and it was good. 

Big Girl

Yesterday, Little Miss Minion held and shook a rattle. According to several sources, this usually happens around 4 months. LMM is 2 months adjusted, so this is fantastic. She smiles at Mr Minion and I all the time and tracks us as we move around. I think I’ve said before, but I’m sure her eyesight is better than mine.

Today, we ventured out for a walk. It was a little cool, so I bundled her up in two outfits, socks, and a hat, plus her blanket. She likes to be pushed in the stroller and fell asleep almost immediately. Mr Minion and I don’t get out much, so it was nice to get some fresh air.

She’s awake for longer stretches after her feedings, so we’ve started doing play mat after the wait for her reflux. She bats her toys and grabs them, which is a great thing, developmentally. She’s also started grasping my fingers or the bottle while she eats.

This week’s excitement is a pediatrician appointment on Monday and the scheduling of her follow up MRI in a couple weeks. She will also get her synagis shot sometime this month, which I am greatly looking forward to. I think she’ll get more shots Monday too. I’m probably the only mom who is excited about more shots.

PSA: If you haven’t gotten your flu shot yet, you should. Help prevent the spread to babies and other immune compromised people.

Physical Therapy

Little Miss Minion gets physical therapy once a week through an early intervention program that she qualified for due to her birth weight. Today’s session went really well and the therapist said that she’s “testing” around 4 months old! She was 2 months adjusted yesterday and she’ll be 5 months next week, so to test at 4 months is awesome.

A typical physical therapy session lasts about an hour. We let her play on her mat for about 5 minutes and the therapist talks to me about new things LMM has been doing and if she’s made progress on her “homework” from the week before. Then the work begins.

Today, we started by letting her stay on her back and bat at her hanging toys. She’s really good at batting them, and the next developmental step is reaching and grabbing them. We helped her grasp one or two, and watched to see how long she’d hold them for. From there, we started practicing looking at things that make noise. She’s still not really doing this, which is ok, and we know she can hear because she startles at loud noises. She just doesn’t care what is making the noise.

The next thing we did was practice kneeling. She’s a very hard worker and she did this for a good 5 minutes, two times. Her leg flexibility is getting better, which was expected. We did some guided tummy time, where we try to get her to look up and to the sides. We use toys, mostly, and her favorite is a black and white zebra.

The therapist gave us some shiny beads to hang on her gym and to dangle in front of her to try and tempt her into grabbing them. They reflect lots of light, which she likes.

All in all, it was a very good session.

2 Months Adjusted

Today marks two months after my original due date, August 6. Little Miss Minion is 2 months adjusted today, and she has learned so many new things since 1 month adjusted. She smiles on her own at Mr Minion and I. She smiles when we smile at her. She grasps toys, bats at the hanging toys on her play gym, and laughs. She rolled over twice yesterday–very impressive. And she will sit almost unsupported, just with light support around her waist. She weighed 9 pounds 7 ounces a couple of weeks ago at her last pediatrician appointment, so I am sure that she is into double digits by now. She’s outgrowing some of her newborn outfits (mostly onesies), and is into 0-3 months now. She’s still taking about the same amount of milk-right around 100-110 mls, which is 3 1/2 to 3 3/4 ounces. She’s starting to finish them completely, so we’ll probably bump her up to 120 mls, or 4 ounces, in the next couple of weeks.

Our other big milestone this month (besides her 5 month birthday on the 14th) is her first Synagis injection. Synagis is a shot that is given to at-risk babies to help reduce the severity of RSV, should they acquire it. You can read more about it HERE. She qualifies based on her birth weight and will get one shot every month for five months. What’s the big deal, you might ask. All babies get sick, after all. How else will they build their immune systems? The reason is simple. Preemies didn’t get the chance to build their immune systems in utero and therefore are much more likely to get sick than full term babies. Preemies (or any baby born before about 37 weeks) will have underdeveloped lungs. A baby born at 40 weeks had 3 full months of extra time to soak up antibodies than Little Miss Minion did. It is of vital importance that she gets the chance to build her immune system without the challange of being sick. Below are some images that might help you to picture the differences.

Keep in mind with the Lung Capacity image that the smaller set of lungs is representative of a baby born at 34 weeks. This is 6 weeks older than Little Miss Minion was at her birth. Preemies who get sick with RSV can end up in the hospital and can require ventilators, or breathing machines. Their airways are too narrow, and with the inflammation of something like the cold, flu, or RSV, they quickly become unable to breathe on their own. I’ve seen Little Miss Minion on a ventilator and it is not something I care to experience again.

My final word on isolation (for today, at least) is this letter, written by the parents of a 23-weeker. I’ve copied the first part of the text below, but http://anearlystartblog.com/2014/01/07/isolation-isnt-about-you/ is the link to the full version of the original letter and website. Many, many thanks to Andrea M for allowing me to link it here.

Dear Extended Family,

Isolation isn’t about you. Let me explain…

Babies who are born prematurely are different than full-term babies. First, premature babies have under-developed lungs and often require life-support and breathing tubes for days, weeks and even months. An important goal for every premature baby is to breathe on their own. Unfortunately for some preemies this doesn’t happen. Some preemies come home on oxygen support or on a ventilator. Their tiny lungs are not capable of keeping them alive without the help of a machine.

Happy Cold & Flu Season!

October 1st is the unofficial start of cold and flu season. For Preemie families, this marks the start of the most anxiety-ridden part of the year. Since preemies have underdeveloped lungs when they are born, and since they are generally lacking in antibodies, they are very susceptible to any kind of illness or infection. Further, their airways are generally narrower than full term babies, making them more likely to have breathing problems as a result of illness. 

Isolation is the best medicine for cold and flu (and soon, RSV) season. No exposure means no germs. People have told me that she needs to have SOME exposure in order to build her immune system, and that we can’t keep her in the bubble forever. These would both be true, if she was full term. She needs to have time to build up her immune system through antibodies in breastmilk. She needs to have time for her lungs to continue to develop. She needs time to get bigger and stronger. She needs the bubble because she can’t fight things off quite yet. 

Her Synagis shot (to help prevent severe RSV) should be coming at the end of this month. She’ll get this shot once a month for 5 months. Most babies get RSV by age 2, and build immunity quickly. It’s usually just a case of sniffles, maybe a cough. For a preemie, RSV can easily require hospitalization, supplemental oxygen, even a respirator. Adults can be carriers and feel perfectly fine. RSV is one reason the isolation is so important. 

My public service announcement: get your flu shot. Not only will you be protecting yourself, you’ll be protecting vulnerable populations (like babies) who can’t get the vaccine yet, but who are at highest risk of complications.