Tag Archive | rsv

Speaking of which…

My last post was about the start of cold/flu/RSV season. Since then, Little Miss Minion has been fighting off a cold that has turned into a sinus infection. Lovely. We took her to the pediatrician yesterday and they gave her some antibiotics to help clear the sinus infection that might turn into an ear infection. The average kid should be getting better by now, with as long as she’s had this, but since she’s a preemie, it takes her a little longer to fight things like this, especially given her weakened lungs. 

We did get some new stats on her though! She is 17 months old, 14 months adjusted, and weighs 19 pounds 8 ounces! We are almost at 20 pounds, ladies and gents! 

In other news, we got her orthotics and new shoes for her, since she’s in the big kid class at daycare. I also scored an entire winter wardrobe for her over the weekend for about forty bucks. She’s in 9 month clothes now, so I bought 9 months and 12 months. The organization that holds the sale has several a year, and the next one is in the spring. I’ll take stock of where she is then, in terms of sizing. One thing is for sure: we definitely get our money’s worth out of clothes for her! Growing out of a size every week? Psssh, not with a preemie in the house! I guess when she’s like 80 and looks 40, she won’t mind as much lol. 

Welcome to Cold/Flu/RSV season! 

It’s October, and you know what that means! Cooler temps, pumpkin spice everything, and the onset of cold/flu/RSV season! If you haven’t scheduled your yearly flu shot, you really should, especially if you have contact with young children or the elderly. Herd immunity is so important to protect our most vulnerable populations. As you should know if you are a reader of this blog, preemies in particular are incredibly susceptible to illness, but especially RSV. Most babies get RSV by the time they are two years old and it manifests as a bad cold. Not so for preemies. RSV can cause pneumonia, bronchiolitis, even death. 

This year will be Little Miss Minion’s second Cold/flu/RSV season, and her first without the monthly Synagis shots. In case you’ve forgotten, Synagis is a shot of antibodies given to the most vulnerable preemies to try and boost their immune systems to fight off RSV. LMM doesn’t qualify for the shots anymore, so she will be facing this season on her own. That means that the Minion household will be extra vigilant about germs–not that we aren’t already. 

This concludes my annual plea to get yourself and your family a flu shot this year. Help protect babies like Little Miss Minion, who can get severely ill from something as simple as the flu. Stay home if you are sick. Wash your hands. Cover your mouth when you cough. Keep your germs to yourself!

7 months adjusted

Little Miss Minion got her (probably) last synagis shot the other day. It’s a bad season for rsv so they aren’t sure if there will be one more shot this year. We got a new weight for her too: 15 pounds,  1.2 ounces! That’s a little over 8 times her birth weight, in case you were wondering.

She’s got the tiniest little spot of a tooth coming in on the top. It seems to be taking its time to come in, but it’s not bothering her.

She’s a rolling champion and a really good sitter. She sits mostly by herself now, for about 10 minutes at a time. She loves playing with her stackable cups and dolls. She loves to “talk” with us, making noises and then we talk back to her.

She’s so so close to crawling. She can pivot using her hands and arms, but she can’t move forward just yet. Soon…and then she’ll really be mobile and we’ll have to baby proof!

Are we there yet?

Two more months until we can start bringing Little Miss Minion around other people. It’s going to be so strange to be able to go grocery shopping without putting it on a calendar, or being able to run into the store for something without having to plan on someone watching her.

I know she’ll probably be sick all summer from being out among the general population. We will still do our best to prevent that since her lungs won’t have caught up yet, but her immune system will be so much stronger than it was that time last year.

I’m looking forward to showing her off. Hey everyone, look at my warrior baby and see how big and strong she is! See her shunts and know what she has been through. Receive a smile and know that you witness a miracle. Try to touch her and I will rain hell fire down upon you. 🙂  No reason to tempt fate.

Attention: Milestones ahead

This has been a good week so far for milestones. Little Miss Minion rolled from stomach and back over her left arm the other day, and tonight she rolled from her back to her stomach! Theoretically, she could roll around the house now, if she wanted to. She’s also gotten really fussy with her bottles in the last couple of days, and since her fontanel feels fine, we are thinking that she needs the next size up in bottle nipples. The pediatrician told us in December that we could start her with a sippy cup, but she hasn’t really been ready for it until now. So this weekend, I’ll be buying size 3 bottle nipples and some sippy cups!

We’re still working with her on consonants. I sing the Star Wars theme to her with all B sounds, and she likes to hear it but she won’t repeat it yet. 

It is Appointment Central over here. She has an MRI and neurosurgeon follow up (the first one we will have made it to, since she kept having shunt issues). She has her Synagis shot. She’s got her six month follow up NICU visit. She gets physical therapy once a week. Sometime soon, she needs to see her pediatric opthomologist, an audiologist, her pediatric neurologist (different from her neurosurgeon), and she’s got another pediatrician check up in there somewhere. 

It’s a good thing I have such a good memory. 🙂 

Trusting the Groundhog

According to the Groundhog, spring is coming early this year. This is the first year of my life that I’ve been excited to say goodbye to winter, mostly because the end of winter means the end of cold/flu/RSV season. It’s a little closer to the day when we can finally take Little Miss Minion out into the world for something besides a shot or a doctor’s appointment. Come on, spring, hurry up!

Our physical therapist is going to be so excited tomorrow when she finds out that LMM has been rolling over both arms. She had only been rolling over her right arm, and it looks like all her hard work has made a difference!

Seven months!

Today is Little Miss Minion’s seven month birthday! She also had a pediatrician check up this morning, so I have lots of fun new stats for you. She is 23 inches long, and a whopping 12 pounds, 10 ounces! Her percentiles are: 50th percentile among very low birthweight girls, 25th percentile among low birthweight girls, and 3.77th percentile of full term babies, unadjusted for prematurity. That last one sounds bad, but she hasn’t ever really been “on the chart” before, so this is fantastic. Her head circumference is perfect, which is an important thing to look at with her hydrocephalus. Overall, it was a very good visit. 

She’s rolled over a couple more times this week. She has started spinning a toy on her bouncer, which shows that she’s starting to understand cause and effect. She likes it when I play peekaboo with her and she loves kisses and smiles. So far, she’s eaten rice cereal, oatmeal, sweet potatoes, apples, pears, and peas. She was holding a spoon while we fed her the other day and she shoved it in her mouth. She gets oatmeal in the morning, half a container of food at lunch, and a full one (if we’re sure she won’t have a reaction) for dinner. She’s also eating 4 ounces of breastmilk every couple hours still, since that is where most of the calories should come from for several more months. 

She likes to chat with us, especially in the mornings. She coos, we talk back to her, she coos again. Sometimes she gets really excited and squeals and screams. Her pediatrician and her physical therapist both say that she’s very social and a very happy baby. 

Synagis shot #2 is tomorrow. This is the RSV antibody injection that she will get once a month during RSV season. A new study I read about said that by the age of three, something like 95% of all babies will have gotten RSV. For full term babies, it usually presents as a cold, possibly requiring the use of a nebulizer–picture an oxygen mask with aerosoled medicine. For preemies, it usually presents as difficulty breathing, extreme lethargy, high fever, and blue-tinted lips and nails due to oxygen deprivation. Obviously, RSV is a big deal for preemies. Treatment involves admission to the hospital, being given oxygen, being put on a ventilator if the lungs are too weakened to work properly, and medication for inflamed and irritated airways and lungs. Secondary infections can include bronchiolitis and pneumonia, both of which are very bad news for a preemie with already-weakened lung function like LMM. 

The upshot of this: isolation is good. No people, no germs, no illness, and no hospital admissions. 

Looking Good

Little Miss Minion had a follow up MRI this morning to make sure that the old shunt is working, the ETV is working, the new shunt is working, and that there aren’t any pockets that aren’t being drained by the aforementioned methods. And the verdict is….Cleared until February 2016! The neurosurgeon was “ecstatic” and “very happy” with how her MRI looked, so hopefully we are in the sweet spot where everything is in balance.

Her physical therapist is pretty happy with her lack of regression over the past month. We’ve had to cancel 2 sessions because she was either in the hospital or still recovering. Usually, babies regress much more after surgery and she had two in two weeks.

She’s started playing with her toys more. She grabs them and actually grips things. After her bottles and 20 minutes of upright reflux rest, we usually lay her down on her mat and let her play with her toys. They hang from a support so she can bat at them and grab them. Her favorite is a zebra that Mr Minion named Paul, because “why not?” Next is a fish that I named Joe after Joe Pesci, whose real name is Joey Fisher. Then we realized that we had Joey and Pauly, the Goodfellas gangsters, so we named a doll that she loves Marie, since all the guys were married to girls named Marie in the movie.

She holds rattles, sucks her thumb, puts everything in her mouth, sucks on clothes, her hands, toys. She smiles and laughs all the time. She’s really nailed rolling onto her side, but she can’t quite make it all the way over consistently yet.  Her abs are not as strong since they added the second shunt and catheter, but she’s bouncing back really well.

She got her first RSV shot this week. She’ll get one per month for 5 months to help boost her immune system’s response to rsv. Most recent weight: 11 pounds,  9.3 ounces.

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.