11 months

The little guy turned 11 months old on the 22nd.

This month was eventful for Miller.

He got RSV and was hospitalized for a couple of days.

He got a cranial band to help with his plagiocephaly.

He visited the NICU where he spent the first 7 and 1/2 weeks of his life.

He got diagnosed with asthma and we got introduced to the world of steroid shots, inhalers, and nebulizers (like this cute little panda one his insurance provided).

He weighed in at almost 19 lbs at his last appointment.  He is still in size 3 diapers.  He is in 12 month shirts and 18 month pants.  Long and lean!  He wears size 3 shoes, although the boy still goes barefoot or just with socks most of the time because he takes his shoes off and tries to chew on them.

He is taking about 5-6 bottles with 6 oz of formula each day (a total of 30+ oz a day), plus 2-3 meals of baby food (usually fruit in the morning and a veggie in the evening).  We are trying to introduce some textured foods like Gerber puffs, bananas, mashed potatoes, avocados, etc. but it's not going too well.  He has some mild oral aversions.  He is going to be meeting with a speech therapist soon to address this.

He is crawling much better and even getting up on hands and knees more.  I think he will be pulling up on stuff soon.

We are treating his asthma with an nebulizer (breathing treatment) or inhaler and the occasional steroid shot if it gets bad.

Some things Miller loves:
*trucks and cars
*squash and sweet potatoes
*going on walks
*laughing with his big brother
*when I sing to him
*bath time

Some things Miller doesn't love:
*diaper changes
*getting dressed, especially if it involves long sleeves shirts or socks
*when his nose is stuffy and I have to suction it with the bulb syringe
*loud or startling noises
*getting a breathing treatment
* having to sit still


We love you Miller man!  We love watching you grow and learn.

Helmet progress

I think I might have explained before how the cranial band works, but just in case I didn't...

The cranial band (helmet) is considered a passive treatment, in that it does not force change, but rather directs the shape of the skull.  There are spaces in the helmet that encourage the skull to round out that way.  It does not put pressure into changing the shape of the head.

So far, Miller has been wearing his helmet for about two weeks.  Most days he doesn't seem too bothered by it, but every now and then he just gets in a mood where he does not want it on.  My guess is because it can get his head pretty sweaty.  We try to find other ways to keep him cool, such as putting him in short sleeves and leaving socks off him.  Every night when he gets an hour out of the helmet, I spray it with rubbing alcohol, wipe it clean, and let it air dry.  During this time, Miller gets a good bath and I shampoo his hair.

He has been napping and sleeping in the helmet and it does not seem to affect him much, if at all.  In fact since he has been wearing the helmet all night, he has been sleeping through the night.  I don't think it has to do with the helmet, but it's just an observation!

Here are some pictures to document the progress thus far.

Side view.  Top picture is Miller when he was about 6 months old, before he got his cranial band.  The bottom picture is after 2 weeks of wearing the helmet.

View from the top of Miller's head.  It is kind of hard to see since he has so much hair, but the back of his head is more even.

All in all, we are starting to see a difference in just 2 weeks of wear.  I can't wait to see how much difference it makes when he has completed his helmet wear.  We are looking at 3-6 months until completion.

Miller's helmet

I've talked before about how Miller has torticollis and plagiocephaly (flat head syndrome).   He has been seeing a physical therapist for several months now and recently got his cranial band (helmet).

There is a "breaking in" period where he wears it for a little while and then takes it off for a little while.  Each day, you increase the time he wears it and start adding in naps and then nighttime sleep.  Eventually, he will be wearing it for 23 hours a day.  The hour that it is off will be during his bath time.  We also clean his helmet during that time.

We had to start the breaking in process all over again after his hospital stay, since he did not wear the helmet while he was sick.  So now we are back up to 3 hours on, 30 minutes off throughout the day.  Today he will wear it during naps and tonight he will sleep in it.

The cranial band does not put pressure on his head, instead it leaves a space where we want to encourage his head to round out.

About a month ago, we took him in the the Orthotics and Prosthetics office and they did a mold for the cranial band.

Declan wasn't too thrilled about what they were doing to his little brother. 
Miller didn't mind it one bit.


A couple of weeks later we got a call and went back to get it fitted.  They put the cranial band on him and made some marks to adjust it.  Then they took the cranial band off and trimmed it up around the edges so that it fit Miller better.

We were given instructions about the breaking in process and how to keep it clean.

                       Miller looks so big in the picture above!


After we got the helmet, I took it upon myself to decorate it.  I bought some vinyl stickers made specifically for cranial bands.  We got an airplane set and a dinosaur set.

And let me tell you, it took forever to apply the stickers.  I had to cut each individual stickers out, apply it, smooth it with a card, and apply Mod Podge to seal it.  The bigger stickers weren't that troublesome, but the little dashes that go with the airplane were a pain!

Last week we went out in public with his cranial band for the first time.  We had a doctor's appointment for Miller.  I was interested to see how people would react or what they would say.  No one made any comments that day, but people sure did stare.  I wasn't sure if they realized that he was wearing it for medical reasons or if they just thought I was a very overprotective mother.

So far he is adjusting fairly well.  Each day he gets a little more tolerant of it.  He goes about his normal activities like before.  Here he is eating with his cranial band on.

Sleeping with his cranial band made me extremely nervous for some reason.  The orthotics and prosthetics office assured me it was completely safe and there was no reason to worry, but I still did.  The first nap he took with it on, I sat there and watched him almost the whole time.

All in all, things are going well with the cranial band.  Some people may not understand why we chose to go this route, as doctors are split 50/50 on whether they think it truly works.  Our thought process was that if we had the issue and our parents could have done something to correct it, we would have wanted them to.  And Miller's measurements showed a significant difference, as far as the left side of his head protruding out further than the right side.  And left untreated, it can cause misalignment in the jaw which is not something we want for our child.

Five for Friday

1.  This song.  Lately I have been hurting a lot, missing Lucas so much it hurts to breathe.  I have been dreaming of him.  I have been longing to hold him so badly.  Longing to kiss his perfect face.  Longing to rock my baby to sleep.

People often say things like that I should just be thankful for what I have here, meaning Declan and Miller.  Trust me, I am ever so thankful for them and their health.  But that doesn't mean I won't miss Lucas like crazy or that I won't grieve for the things I am missing out on with him.

What I am so thankful for, more than ever, is that someday I will get to see Lucas again.  I will get to hold my baby.  I will get to see him, perfectly healed and perfectly happy.

2.  This is how Declan watches Cars now, with his toy cars lined up on the TV stand.  His favorite part of the movie is the first racing scene and he makes his cars race too.  It's so precious.

3.  Declan has acquired a taste for ketchup lately. I love ketchup, so I completely understand, however some of the things he wants to dip in ketchup are too much even for me.  For example, in the picture below he dipped his cinnamon maple crunchies in ketchup.  Yuck.

         Doesn't Miller look so cute in the background with his helmet?

4.  We are addicted to a new TV show- Parenthood.  It's so good!  I can't binge watch TV shows like I used to but we try to squeeze in an episode or two a night.  Between discovering Parenthood and new episodes of Once Upon a Time starting last week, I'm happy.

5.  We are finally starting to get some nicer weather.  Hallelujah!  I'm so ready for spring.  And with spring time, comes Miller's and Lucas' birthday, followed by Declan's birthday.  And then mine.  And then Thomas'.  We have April, May, June, and July covered in the birthday department!

Update on Miller

Miller is now home from the hospital and recovering from RSV.  RSV is a respiratory virus that virtually everyone gets at some point or another.  For most people, it is no more bothersome than a common cold.  For preemies, young babies, elderly people, or people with weak immune systems or lung disease though RSV can be dangerous.

All winter long we took many precautions to protect Miller from RSV.  Frequent hand-washing, avoiding crowded areas, and getting the Synagis shot monthly.  The Synagis shot doesn't always prevent preemies from getting RSV, but it can greatly decrease the severity of the virus if they do get it.  For Miller, it did decrease the severity, thank goodness.

It all started with some sniffles and a runny nose this past weekend.  Then he developed a cough.  Sunday he was not feeling well at all and I was fearful of him having the flu, so we took him to the minor med.  He tested positive for RSV and was transported to the children's hospital by ambulance.  Of course, I lost it and was sobbing.  My baby had RSV, the thing we feared all winter and he was being taken to the hospital where we had to say good-bye to Lucas.  I was emotionally spent.

We stayed in the ER for a little while.  They did some breathing treatments and gave him some oxygen.  The ER doctor said he thought Miller only had a mild case of RSV and that he might send him home after a few hours if his O2 SATS were ok.  He didn't want them to go below 91.  Well, they started to dip into the mid 80s, so the doctor decided to admit him to the infant unit and keep him overnight.  By the time we got to his room it was almost 3 am.  Little man was worn out.  Thomas came up to the hospital and stayed with Miller the rest of the night and I went home to be with Declan.  Thank goodness for the help of my parents because at this point I was running a 102 fever and had chills and a very sore throat.  They helped take care of Declan, did my laundry and dishes, and cooked dinner for us for the next couple of days.

The little guy slept hard.  The red marks on his face are from the tape they put to keep the oxygen tubes on.  Apparently his skin is very sensitive to medical tape.

                            How we spent most of the day.  Lots of cuddles.

I got to the hospital around 9 am on Monday and met his super sweet nurse, Shirley.  Thomas and I went to the cafeteria and got some breakfast to take back up to the room.  We then watched our sweet boy sleep and prayed that he would start to feel better.

He was able to hold his O2 SATS up on his own, so then the only thing holding him back from going home was eating.  He did not want anything to do with his bottle for a few hours, but then gobbled it up around 4 or 5 that afternoon.

He started improving with breathing treatment and deep suctioning.  He even felt like playing in the bouncer.  I think just being in an unfamiliar environment was a little unsettling to him because he wanted me either right next to him or holding him constantly.  Eventually I started to get hungry so some volunteers from the hospital came in his room to hold him and watch him while I walked to the cafeteria.  I love that they have baby holder volunteers there.  It eased my mind a lot to know he could be held and rocked even when I was away briefly.

Cutest little patient I've ever seen.  The mini hospital gown was adorable on him.
I will also point out that the majority of my time there was spent trying to keep him
from chewing on the cords and lines hooked up to him.  He was fascinated with them.


All in all, we are lucky that the RSV wasn't as bad as it could have been.  Throughout all of this, I was really reminded that although Miller is healthy for a preemie, he is still a preemie.  Premature babies aren't just little babies that need to grow and then everything is normal all of a sudden.  Prematurity has consequences.  Lung development is a big one, and also why RSV is so scary to preemie parents.

Thankfully he is on the mend.  The doctor said his cough could last up to 6 weeks, but he should improve little by little each day.  He has another Synagis shot to carry him through the rest of the RSV season, which is over in April.  We will be implementing stricter precautions during the remainder of the season since his immune system is a little weaker than normal.  Another bad thing about RSV is you can get it more than once.

Thanks to everyone for their prayers for our little guy!

RSV

Late Sunday night Miller was taken to the children's hospital by ambulance due to breathing difficulty. He tested positive for RSV which is a respiratory virus that can be very dangerous to preemies and infants. As preemie parents we were taught to fear RSV, for many times it gets very bad very quick. All winter long Miller received a monthly Synagis shot to decrease the chances of getting it, but it doesn't completely protect him 100%. So here we are, battling RSV. I will go into more details later but he stayed in the infant unit Sunday and all day Monday and was released late Monday night to go home. He still has some rough days ahead of him and RSV can get worse before it gets better so we need prayers for him.

3 weeks!

Sorry I've been a little absent lately.  The reason is because we have all been, at some point or another, sick for 3 weeks.

3 weeks.

That is 3 weeks of fevers, stomach bugs, flu-like sickness, no sleep, coughing, and spending a small fortune on Pedialyte and Tylenol.  I thought we were in the clear about a week ago because we went almost 48 hours without anyone having symptoms or fevers, but alas, it struck again.  First with Declan, then Miller and me.

I'm worn out.  Thomas and I are averaging about 3-4 hours of sleep per night.  I do not do well with lack of sleep.  Thomas does much better than me, perhaps from his Army days, but still he is getting worn out too.  Let's hope that after this round, we will be on the mend.

In other news, Miller got his helmet.  He is still in the "breaking in" period where he wears it for a little bit, then takes it off for a little bit.  And I'm not putting it on him at all today since he has a fever and is feeling really rough.  But so far he doesn't seem to mind it too much.  I fancied it up a little bit with some stickers.

 He makes wearing a helmet look pretty cute, huh?