On the Mend

Baby Girl's ear infections and sinus infection are definitely improving... Hooray!!

The air purifier is remarkable... I notice a huge difference, largely because I walk into my house and I smell.... nothing.  Which of course, makes me wonder exactly what the house smelled like before.... but I'm definitely noticing a complete absence of smell.

Healthway 20600-2 Purification System

It's pretty large and isn't very attractive, but it definitely does the job!  For Christmas, I'm thinking maybe some lights and ornaments will help??  Nah, probably still won't fool the kids... they'll still want the tree up.

Reagan still isn't eating enough during the day to get her through the night.  She still eats twice per night... usually once around midnight and then again at 4 or 5.  Two nights ago, she ate at 3 and 8, which was incredible!!  Something like that would definitely be an improvement as to how much sleep Mike and I are getting!  One thing that has been WONDERFUL this week is.... our first week since she was born with no doctor's visits whatsoever!  If all goes well, she won't have anything until her ENT appointment on November 8th, and her 4-month well visit on November 19th.  

In other nighttime news, Ryan is having some trouble lately with wetting the bed and then wanting to sleep with us since his sheets are wet, so I got him this chart and hopefully that will help motivate him!  

Ryan had a blast Trick-or-Treating with some friends this past Friday.  

He's actually going to be Jupiter for the "real" Trick or Treating but in this case, his costume would have been ruined because it was trick or treating in a strip mall with about 9,000 kids.  Violet's (the cutest iced donut ever!!) mother offered to take him so that RK didn't end up out in the cold while being sick and I was so thankful!!!  Ryan had a wonderful time, which was really important to me since sometimes, it's hard to give him all the attention he deserves and wants.

We also spent some time on Saturday with Mike's uncle and his wife from South Carolina... and they brought their new 10 week old puppy, Otis!

He is part Border Collie, part St. Bernard, so he is going to be very big!!  Ryan loved playing with him while Reagan watched.

Sunday morning started off with brunch, cooked by Daddy and Ryan!  The kids were chilling out in diapers until it was time to get dressed and head off to the NASA Goddard Visitor's Center.

Ryan says, "Cheese!!!"  Reagan loves her Robeez that we found at Once Upon a Child!

Posing in front of one of the murals

Sitting in the Gemini 7 replica

Captain Ryan and Co-Pilot Daddy!

Playing around in the gift store

Ryan had $15 that he was allowed to spend for the day.  In the gift shop, he chose a space shuttle, a bouncy ball, and a parachute rocket, all of which just so happened to total $14!!  Ryan is an excellent shopper with very discerning taste.

After the Space Center, it was off to Ruby Tuesdays for lunch and Red Velvet cupcakes for dessert!!

Busy!

I'll start with a note on my last entry.  Thank you all for your feedback!  I definitely do not recommend spraying the actual Lysol cleaner in the air!!  I was referring to Lysol Nutra-Air.  Unfortunately it does not come unscented, but this is why it's best to use right before you go out so you are not around the scent at it's strongest.  I also agree that it is best to eliminate chemicals and airborne pollutants whenever possible, and I'm really hoping we've found a way to do that!  More on that later...

It's been a crazy week... and it's only Wednesday!!  First, some pictures.

The mold remediation specialist (yes, his official title!) came to clean the A/C units on Monday.

Nice and clean!!

We also had a chance to spend some time with our neighbor's children.  Ryan absolutely loves playing with Samantha!  She wanted to hold Reagan and Reagan loved hanging out with her!

Ryan chose his outfit himself... tie included!

Joey is almost nine months old and weighs 21 lbs!  He is exactly twice the size of Reagan

 I've searched high and low for a Halloween costume that is small enough to fit Reagan.  I wanted it to be an actual costume and not just a onesie outfit.  Finally, at Old Navy of all places, I found it!  Reagan is going to be a little leopard.

My beautiful girl in her hat that her Thea Pauline got her...

With such a beautiful smile, it's hard to believe that my poor girl's cold ended up being a sinus infection and a DOUBLE ear infection!!!  Poor baby, no wonder she's had a hard time sleeping.  Thankfully she ate well this week and passed her weight check yesterday.  She gained 4 oz in a week, and now she weighs 10 lbs, 15 oz.  Almost there to 11!

In addition to cleaning the A/C units, we've taken further proactive steps in ensuring a healthy home for Reagan and Ryan.

Reagan's pulmonologist called to check in on Monday.  I explained to him that she had a really bad cold and that she had a weight check on Tuesday since she failed last week's, and that we'd be seeing her pediatrician which I was glad about because I definitely thought her cold was getting worse.  He recommended a home air purification system through Healthway that is an FDA-approved Class II medical device.  You can see and read about it here.  New, they run about $740, but you can often find them on eBay through distributors.  Just our luck, they had ONE left for sale currently, and the distributor was asking $499.99 but was accepting offers.  I offered him $300 and explained our situation and why the purifier was necessary.  He accepted my offer only twenty minutes later, and shipped it immediately.  It's on the UPS truck for delivery today!!  Apparently, after running for only an hour, your air is 90% cleaner!  This is the residential form of the Healthway systems that are used in hospitals, nursing homes, daycares, etc.  Especially with the winter cold season coming up, I think this will be wonderful for our family.  Pictures of the unboxing to come upon arrival!

Informed

Reagan's cough seemed worse last night.

We debated briefly about taking her to the hospital, but decided that if we changed her sleeping position and it got better, then we'd wait it out.  She did seem to improve when we put her in her car seat to sleep, although it still took a bit for her to get settled.  This morning, I brought Reagan into the bathroom while I took a shower and then left her in there for a bit longer while I got dressed since she was sleeping the whole time.  This really seemed to help as well.  I left her in her car seat for this also, and pulled the rain visor forward so that the steam would get trapped around her instead of dissipating.

She has an appointment with the pediatrician on Tuesday for her next weight check.  The good news is that she as already increased her volume of formula... this happened almost instantaneously on the Nutramigen, even with a cold!!

Yesterday, in a 12 hour period

She always eats more in the earlier part of the day than the later part, but she still finished yesterday with 675 mL of formula, or 22.5 oz... her best day in a LONG time!!!  Let's hope she continues along that path, and yesterday wasn't just a fluke.

Several of Reagan's doctors have told us that we need to be very careful this winter to watch Reagan for any signs of infection.  As I said yesterday, babies with severe reflux already have a lot of congestion.  Since their sinus regions are irritated on a somewhat regular basis, this makes catching colds and viruses easier for them.

I've been doing a ton of research-based reading on RSV, Bronchiolitis, Pneumonia, and the Flu in small infants.  I feel like the best thing I can do for Reagan is to stay informed and to arm myself with as much knowledge as possible so that I know what to look for this winter and how to help her.  Some people may feel that reading in excess can increase worry, but for me, it definitely is calming.  The more I know, the better I feel about what I can do to help her.

For example (you're welcome!), did you know that having air purifiers in all levels of the home is the first and easiest thing you can do?  Dusting all surfaces, vacuuming upholstered furniture and carpeted areas, and cleaning tile and hardwood are also easy, and reduce the number of allergens and airborne pathogens in the home.  Even though it sounds crazy, try to pick a time when you and the family are going out for awhile, and spray the air with Lysol spray.  Believe it or not, keeping your refrigerator and freezer and sink areas free of bacteria also help reduce the number of infections you and your children can get.  One thing I didn't think of was the fact that people can get Legionnaire's disease from air conditioners and venting systems in the home.  If you don't clean your vents or a/c units regularly, you may want to think about doing it yourself or having a handyman come out and do it for you.  It will usually take under an hour, so for their hourly rate (usually between $30-60), you can be sure that the air you are breathing is clean!  Cleaning a venting system takes a little more work, and I haven't researched much into the prices for that as we do not have vents in our home (radiant heat and window/wall AC units).  This is definitely on my list of things to do.

Of course, hand-washing, sneezing into your elbow instead of your hands, throwing away all dirty tissues, washing bedsheets and towels in hot water... all goes without saying.  If you're interested in reading more, here are some of the lighter sources I found most helpful:

Info on RSV from the CDC

Bronchiolitis in Infants (yes, Bronchiolitis is different from Bronchitis.  Bronchiolitis affects the smaller airways of the lung, while Bronchitis affects the larger airways)

Legionnaire's Disease

The flu in babies

Weight Check Fail

Just as I thought, Reagan did not pass her weight check on Monday.  She gained 3.5 oz in two weeks.  This means that we are now have weekly doctor appointments.  She also has a severe cold, as the doctor put it this morning.  Reagan's severe reflux causes congestion anyway, so when she gets sick, everything is exacerbated because her sinus region is already compromised.  Therefore, when she does get sick, she's going to have more problems in her sinuses than most babies.  Additionally, the laryngomalacia and stridor can make it very difficult to detect actual wheezing from the wheezy sounds that she already makes.  All of this means that we have to really keep an eye on her when she is sick so that we know how we need to treat it.  Monday was also her three month birthday!

The doctor did give us a script for a bronchio-dilator in the event that she does develop a "true wheeze," but I don't need to get it filled if she doesn't need it.  We'll know more as we watch her sleep tonight.

In good news, Reagan's hypoallergenic formula will be covered by insurance... the doctor's letter did the trick!!

We're actually all sick right now... me: sinus infection, Ryan: bad cold, Daddy: cold.  Fun house, take two!

Even with a yucky cold, Reagan still manages to be the most beautiful baby girl I have ever seen!!

The Hardest Thing

It's about eight hours since my last post.  For the fifth night in a row, I slept horribly even with Mike taking care of her for her 4 AM Prevacid dose and 6 AM feeding.

Reagan ate a total of 13 ounces yesterday.  In order to maintain her weight, she should be eating around 30 ounces per day.  On a good day, Reagan eats 18 ounces.  Yet, she has been gaining weight.  We have weight checks every two weeks at her pediatrician's office.  The ebb and flow of nerves surrounding these wears me out!

Before the weight check, the dread starts creeping in... is she going to gain weight this time?  What are they going to say?  What if she suddenly isn't... what else can we possibly do that we haven't already??

So far, we have been really lucky.  With the exception of two weight checks, the others have been good.

I don't feel so confident about our next one tomorrow, especially because lately, Reagan has been crying so hard that she wears herself out and passes out asleep from exhaustion.  She is not a good sleeper during the day.  She catnaps.

Ryan's usual bedtime is 9:00 PM, which to me, is already pretty late.  Last night it was 10:45.  He and I did a puzzle, then he said his belly hurt because he was really hungry.  He ate a bowl of cereal, drank some milk, and finally agreed to go upstairs.

When I think about Ryan, my heart breaks.  The past few days have been really rough.  Actually, this entire process has been really rough.  I know I lose my patience with him a lot more than he deserves.  I'm trying so hard to make sure that I am encouraging, positive, and gentle with him.  Sometimes this is really hard, especially when Ryan acts out negatively because he is getting so shortchanged on attention.

It's really interesting to watch how Ryan's behavior escalates negatively as Reagan's needs escalate.  When she is at her worst and crying uncontrollably to the point where absolutely nothing is helping, Ryan typically throws a temper tantrum, drags every toy he owns into the living room, and curls up on the couch in a ball.  Sometimes, I come out of the bathroom after trying to soothe Reagan with the steam from the shower (which for whatever reason, works well most of the time), and he has managed to trash the house in the five or ten minutes we were in there.

Sometimes, he says point blank, "You are ignoring me, Mommy."

"Do you have time for me, Mommy?"

For those of you that know Ryan, you know that he has a vocabulary extensive enough to rival some adults.  He's witty, he is analytical, and he is able to think through scenarios and string several thought processes together all at once.  He also has a stellar memory.

One example of his ability to analyze beyond his years happened during our late night cereal date last night, when he was circling the books that he wanted from his monthly book order that he gets at school.  Yia Yia and Pop Pop had told Ryan that he is allowed to pick five books from every book order.  This kid adores books.  He'd much rather have new books or new experiences than new toys.  He likes toys, but even on his birthday or Christmas, he will open one toy at a time and savor it.  He'll play with it, appreciate it, and then eventually, move on to the next present.  He usually leaves a few things wrapped and forgets about them until we remind him that he has more to open.  Like me, he's also super into experiences.  He'd rather DO something than acquire a material good.  He gets more excited about the places we go and the things we do together.  Although during our visit at the toy store, I don't think he would have said no if I told him I was buying him the yellow Power Wheels F-150 he was eyeing up!!  Still, the kid appreciates every single thing you do for him, no matter how small.

Oh, so anyway.  Tangent... sorry.

The book order.  First, Ryan circled any book that interested him, for a total of 14 books.  Next, we looked at pairs of books that had similar themes, and he chose which one was the best of the pair, which took us down to seven.  Then, I asked him to decide which five he absolutely HAD to have.  He chose four books.  I told him he could choose one more, and he said "Nope, I'm good.  These are the ones I really really want."

Again, he's incredible, my miniature me.

Some doctors have suggested to us that Ryan won't remember any of this, but I know he will.  After all, the kid still holds my feet to the fire for selling his wagon TWO YEARS AGO!  I fear that one day he is going to recount his childhood memories and it's going to sound something like this:

"My mom yelled a lot when I was really little."

"My sister was sick, so she got most of the attention."

I do my best to make the most of every moment he and I are able to have together.  I hope he always knows how incredibly much I love him, and how hard I tried to make him feel valued, important, and special every chance I got.

Lunch out at Noodles & Company, one of Ryan's favorite spots

Having a conversation with Ryan is a great joy.  He knows a gazillion facts about the planets and the solar system.  He's going to be Jupiter for Halloween.  What three year old wants to be Jupiter??  I think that is so incredibly cool.

Our random conversations are the best:

"My arm is a bulldozer!!  I'm a cheezy bulldozer!  Say cheese, bulldozer!  Cheese!!"

I get to kiss this face every morning, every night, and any time I feel like it in between.  How did I get so lucky?!?

Rough.

Reagan has had a very rough couple of days.
Beginning on Wednesday, she started crying throughout much of the day.  If she wasn't eating, or sleeping, she was crying.  Her discomfort ranged from fussing to all out reddish purple, silent screaming.  You know what I mean... when the baby cries so hard that you hear nothing and they don't take a breath for a good eight or ten or fifteen seconds??  Yeah, that.

This continued on Thursday.  I thought Thursday was absolutely terrible.

Friday was even worse (which I didn't realize was possible, until it got there).

And then I was like wow, Wednesday and Thursday were pretty horrible, but they weren't Friday.

And so...

 We paced.  We showered.  We rubbed back and tummy.  We did tummy time, back time, holding time, bouncing time, rocking time, singing time, outside time, inside time, calm time, dance time.  You name it, we did it.  And on Friday, absolutely none of it worked.

I even tried adding cereal to the Neocate.

Ahh.. the Neocate.

Mike and I have had some serious discussions about this stuff.  We don't see enough of a difference to continue with it.  And as the pediatrician said, if it doesn't make a HUGE difference, then it's not worth the HUGE price tag!!!

Even though our reasoning has nothing to do with the cost, because we'd do anything for our sweet girl... we agree that it's not enacting enough of a change to continue.

So up next?

Nutramigen, which is still a hypoallergenic formula (read: $$$).  I'm amazed at how much I've heard her doctors suggest formula based on its price.  Back when I first heard about the Neocate, the doctor said to me, "There's this great formula that might help her a lot but it's way way expensive so you won't want to try it."

Why do others presume to know your financial priorities??  I would do ANYTHING to help my daughter.  Over the past three months, I have bought a million varieties of bottles, every size nipple under the sun for said bottles, a variety of formula, two different rice cereals to thicken the formula, certain clothes that she finds more comfortable for her tummy than others (you'd be amazed at how much nicer the elastic waistbands are from certain brands), her Mamaroo swing.... I can't say it enough: we would do anything to make Reagan comfortable.

So, maybe the Nutramigen will be better for her.  We're going to finish up the Neocate, and then try to find out... fingers crossed!!!

Three Weeks! Mini Man Adventures!

Mike reminded me this morning that it has been about three weeks since our last major hospital stay.  THREE WEEKS!  This is our longest stint out of the hospital yet, not counting the sleep study which wasn't really a "stay."

I am slowly getting my hopes up that this means things are getting better, for good.  At least, with regard to the laryngomalacia.  Knock on wood, I haven't noticed any major cyanotic episodes in a while.. just a few seconds of cyanosis here and there.

Yesterday, I had the opportunity to spend some one-on-one time with my mini man.  We had a wonderful afternoon.  I picked him up from school, and we went on a nature walk collecting leaves for a project.  I told Ryan to pick up the really cool leaves.  At first, this meant every. single. leaf that he saw, but then when he realized his basket (behind him in the picture) was filling up way too fast, he became more discerning and began to notice only the leaves that had unique characteristics.

The leaves that made the cut

Next, Ryan looked at the leaves and we talked about their unique attributes, then separated them by those characteristics.  He sorted them by color first, then leaf shape, leaf size.... that was fun!  He found a huge leaf that we agreed to carry because it was too big for the basket, but because it was "so so so so cool, MOM!!" it could come home with us:

"This is a reawwy reawwy big weaf!!"

I found these awesome unfinished frames at Michael's for $4.99, plus I had a 40% off coupon, so they were $3!  They're held together by wire links, and they have a piece of black wire at the top of one frame for hanging the series vertically.  We chose some fall colors from our paint collection, and Ryan got busy decorating them.

He decided to layer the colors... the bottom frame is shades of yellow and orange.  The middle frame is red and white, and the top frame is two shades of green mixed together.

While our frames dried, we had a dinner date at Cici's Pizza.

Macaroni and cheese pizza!  Ryan's two favorite foods put together... he was very excited.  Actually, it was pretty good!  How wouldn't it be??  Bread, pasta, and cheese in one bite!!!

After dinner, we strolled through the toy store, and Ryan decided he absolutely HAS to have a Power Wheels F-150.  I reminded him that he has a "motorcycle" (a Batman Power Wheels quad-bike looking thing) and he replied, "Yes, but it's not a yellow truck."  True, very true...

I'm definitely going to be saving up some Amazon points, I think!

Later tonight, we will glue our leaves to the backing and frame them.  I can't wait to see how the finished product turns out!  It was so awesome spending some one-on-one time together, although once we got back to the house, Ryan was very concerned that Reagan wasn't there and he demanded that I "bring her back!"  I assured him that G-ma and G-pop would be bringing her home soon.

Ryan's Batmobile.  It's definitely getting a little small for him.

Advocacy... or, FIGHT! FIGHT! FIGHT!

I carried my baby girl for thirty-nine weeks, six days.

I felt flutters that evolved into kicks...

Flips and tumbles and hiccups...

I began to take note of her little personality before she even entered the world.

Even in utero, my babies have had very different personalities.  Ryan is a very easy-going and laid back child, and was so even in the womb.  Reagan on the other hand, does not and never has liked being messed with.  When Winston would lay his head on my belly, Reagan would kick like crazy because she didn't like the intrusion!

The most invaluable lesson throughout the past three months is that no one knows Reagan like I do, and no one will fight for her like I will.  A mother's instinct and desire to protect her young knows no bounds.

All of these hospital stays and tests have left all of us emotionally weary, but if there is one thing I have learned it is that you never let your guard down, and you fight for your child's best interest every second of the day.  When we were at Hopkins, I felt like no one listened to me.  Reagan didn't need a feeding tube.  I knew she didn't.  I vehemently opposed its insertion and voiced my opinions to anyone... anyone!! --who would listen.  I found myself telling the same stories over and over and over.  Repeating her history again, and again, and again until I had the specific events memorized.

Being able to refer back to this blog helped.

As much as I feel I am advocating for my daughter, this is certainly a fight that has no winners or losers.  I don't feel like I'm winning anything, battle after battle.  It's more akin to periods of settlement vs. unrest.  Right now, we are in a period of settlement; however I am not naive... I brace myself for the next period of unrest, although I want to enjoy every second of the no drama.

Enjoy it... be grateful... thank God for this time of peace.
My mantra, repeating in my head.

Neocate Update

Reagan has been on the Neocate since October 1st.

I've discovered that a can lasts us 3.5 days.  We don't find out until the 15th if insurance will cover any or all of it, which means that I'm going to need to buy another case before then.  I'm still unsure as to how I feel about it.  She seems to burp and pass gas better, with less gas getting trapped in her tummy.  However, she is still colicky, so I'm not really sure if the gas is colic-related or formula-related.  She does seem to spit up more frequently on the Neocate, especially if you lay her down (even though she's always elevated) too soon after a feeding.  The spit up is clear, not white and milky as with the Gentlease, so I feel confident that she's not losing as much nutrition.

Other than that, I'm not really sure if the Neocate was worth it.  The one formula I didn't try that I might have gotten the same results from was the Nutramigen with Enflora  which does pretty much the same thing as the Neocate.  However, Alimentum and Nutramigen supposedly taste the worst of the hypoallergenic formulas.  We also have not tried EleCare.

I promised Reagan's pediatrician that I'd give the formula a full two weeks, and it hasn't even been one yet, so we'll see.  I don't want to buy a whole case if I'm not going to stick with it, though, so I'm going to put in a call to the pharmacy in Chevy Chase, MD to see if I can get her a can from there, even though that is quite a hike from us.

Ryan and His Sister

Ryan has loved Reagan from the moment he knew she was in my belly.  We talked about her often, and about what life would be like when she came out.  Ryan has been an awesome big brother to his little sister.  He hates seeing her sad or hearing her cry.  He tries to help feed her, to give her a binky, and to cover her with her blanket.

Ryan and Reagan meeting for the first time

Holding his sister almost all by himself!

Playing together

Reagan loves watching her brother!

4 AM snuggles

The tummy time twins today