Wednesday, November 30, 2011

Judith's Birth Story (Part 2)

Tuesday, November 30th was spent finishing the 24 hour urine catch.  I was placed on bedrest, and was trying to figure out ways to entertain myself.  I had John bring one of my word puzzle books, and I watched a lot of TV.  I was also busy with visitors (surprise visitors!), and received a bunch of phone calls from family.

I think by this time, the dogs had basically been placed in my parent's car, with their things, and taken to their place to stay while I was hospitalized (John was still staying with me, and going to work from the hospital).  They were very upset, and really didn't know what was going on - Lady knew something wasn't right before I was hospitalized, but I'm sure she knew something really wasn't right.  Buster was extremely upset, and still stresses out if we have to leave them overnight.

That evening, we finished the urine catch, and everything was sent to the lab for testing.  We were told my OB would get the results first thing in the morning, and would talk to us then.

I was hoping that things didn't look too bad.  I knew that it was way too early for Judith to come, as I was only 28 weeks and 6 days along.  I wanted to try to make it to at least 32 weeks, knowing that even if she had to come early, the longer she stayed inside, the better off she'd be.  At that point, I didn't care if I had to be on complete bed rest, but I really wanted to be able to do it at home where I could at least be comfortable in my own bed.

To be continued...

Tuesday, November 29, 2011

CF Clinic

I have a feeling this will get buried among Judith's birth story posts, but for those of you who are interested, I have an update from today's clinic appointment!

It was our first appointment with Judith's new pulmonologist, and I had good vibes about him from the beginning!  He came highly recommended to me from a friend, and I'm so glad we made the switch!  He was able to answer my questions as best as he could, and I finally feel like we are getting somewhere!

First things first, and I know this is what most people are looking for: Judith now weighs 16 lbs 15 oz, and is 27" long.  She gained about a half a pound in a month, and is back on the charts! She's in the 3% for both length and weight!  We'll find out what her head circumference is when we go for her 1 year well baby.

I didn't get to speak with the nutritionist today (she had to leave early), so I don't know when we'll have the green light to transition to whole milk and wean off of the Neosure.  I do know that we will have to supplement, and they want to get that going now so we can keep her caloric intake up.

Her chest x-ray from October looks good, they're still culturing/monitoring the bacteria that they know is present (it's not growing, and they don't want to treat it because studies done on treatment of this type of bacteria show that antibiotics don't really help, and they don't want to risk it becoming resistant), and we can try weaning her off of the Zantac.  Judith's doc isn't totally sure that she's outgrown the reflux since she still shows signs/symptoms of it, but he did say that if weaning off the Zantac doesn't work he'll switch her to something else to try to control it.

I got some better answers about her genetic screen too.  Right now, it would be pointless to repeat the test to try to find the 2nd mutation - we'd get the same results, so we'll have to wait until they expand the panel of mutations before we can retest.  Judith definitely does not have a nonsense mutation, and the lab panel showed that some of the proteins are functioning, hence why she is still pancreatic sufficient.  We have about 2 more years to go before we can feel more confident that she'll remain that way - pancreatic insufficiency usually turns up sometime in the first 3 years of life.  If she does remain sufficient, she will probably have a milder form of the disease, and we'll be able to concentrate on treating the lungs and respiratory system.  I'm keeping my fingers crossed that her pancreas continues to function like it should!

The only bad part of the appointment was Judith's cough.  When they put her on the antibiotics almost 2 weeks ago, her cough went away, but started to come back this past Sunday.  Her doc is putting her on another antibiotic and also prescribed steroid treatment to help her lungs and to try to get rid of the cough.  I am so grateful that we started the Synagis when we did - her doc said they haven't seen too many cases here yet, but the season is closing in fast, and the protection will help her.  I would be extra nervous about this cough if we hadn't started the Synagis earlier in the month.

I feel so much relief after this appointment!  We'll get through the antibiotics - it's possible we could be dealing with all sorts of stuff the whole winter, so all we can do is our best to keep her as healthy as possible, and treat whatever may come up.

Judith's Birth Story (Part 1)

It's 5 days until Judith turns 1.  The 5 days before she was born were a whirlwind, and I can't believe it was 1 year ago when my pregnancy took an unexpected turn.  I want to share Judith's beginnings, with the hope that some day she'll read this and understand what a miracle she really is!

My entire pregnancy was rough, but little did we know how rough things were about to become.  I had a regular appointment with my OB on the Monday after Thanksgiving.  I just started my 3rd trimester, and in the prior week to my appointment I started to experience some swelling in my feet.  My pregnancy-induced carpal tunnel also was acting up more than usual, and my fingers were so numb that I lost a lot of sensation in them (writing and typing were becoming a challenge).  I remember talking to my mom about it, mentioning that by the end of a day of teaching my feet resembled that of a Cabbage Patch doll.  I chalked it up to normal third tri swelling, but made a mental note to talk to my OB about it at the next appointment.

We spent Thanksgiving with my in-laws, and the swelling seemed to have gone down a bit.  I made sure to prop my feet up as much as possible, and took it easy.  I did the same on Black Friday and that Saturday, but by Sunday my legs, along with my feet, were starting to swell.  Monday arrived, and I was blowing up like a balloon.

Cue my appointment that Monday.  It was an evening appointment, around 6:00.  John came home from work, and we left for the doctor soon after... without eating dinner (I said we'd just eat when we got home, figuring the appointment wouldn't last too long).  Stepping onto the scale was concerning: my weight had dramatically increased again, even with a big change in my diet.  I made sure to take off my shoes so my OB could see the swelling - it was the first thing he checked (along with the little test strip they use to check for protein in the urine).  We didn't finish our appointment - he sent me directly to Labor & Delivery for a non-stress test and a 24 hour urine catch.

I went through the catch before, so I knew how much of a pain it was going to be.  He wanted me admitted because my blood pressure was so high, and I was somewhat grateful because I wouldn't have to worry about doing the test at home again.

Everything looked good on the monitors, and Judith was getting pretty pissed at them; she showed her constant disapproval by kicking the monitors (silly girl).  Nevertheless, I was placed in a room for monitoring, and the nurses attempted to start an IV - I have horrible veins, but it took them over an hour to get the lines in, and they took my 1 good vein they use for blood draws (I was not happy about this).

While all of this was happening, my parents were driving to our place to watch the dogs, and to feed them their dinner.

John was able to spend the night with me, and neither one of us got a lot of sleep.  I was uncomfortable, and didn't have a spare pillow to help make me more comfortable.  I didn't get to eat, and was annoyed by that.  The nurses started the urine catch, and the waiting game for the results began.

To be continued...

Monday, November 28, 2011

T-Minus 6 Days

It's officially less than a week until Judith is 1.  Less than a week before I no longer have a baby, but a toddler.

Things have been insane around here since Thanksgiving.  We had a great holiday - the Wednesday before we spent the night at my parents' house, and went to church in the evening.  My "other" church hosted the conference-turned-semi-community service, and I played with the brass group (that's the 2nd time in about a month that my trombone has been played, and it's still trying to figure out what hit it - thank goodness it didn't shrivel up once it saw the light of day!).  Thursday John, Judith, & I drove to see John's parents and one of his brothers, and we had breakfast with them.  Turkey dinner was later that day, with my parents and grandmother.

Judith had her first tastes of some Thanksgiving foods, minus the turkey; she doesn't handle meats well, and I'm honestly waiting until she has more teeth (I'd ideally like to hold off until she has molars, based off of some good advice I was given a while back) before really trying meats with her.  Despite the meatless meal, Judith really enjoyed herself!  Mashed potatoes were an especially big hit:

We even put some gravy on them, figuring it would be a good high-calorie option for her.  She didn't seem to be a big fan.  Silly kid.

The rest of the weekend was spent shopping and preparing some things for Judith's upcoming birthday and party.  We have our paper goods & decorations, and yesterday I finished her pictures for our photo wall.  I feel a thousand times better knowing this is done!  I need to find my Pampered Chef easy decorator and wash it so it's ready to go for cupcake decoration, and there are a few small loose ends that we'll need to take care of, but otherwise we're in good shape!

We have another CF Clinic appointment, and it will be the first one with Judith's new doctor.  I have a big list of questions I'm taking with me this time, and hopefully we can get some answers.  I'm so curious to see how long she is, and how much she weighs!  Next week she'll have her 1 year well-baby visit with her regular pediatrician, and that means shots.  I'm seriously contemplating delaying one of them until her 15 month appointment since she's getting her Synagis injections at this appointment as well - I don't want to stick her too many times, and I'm wary of overloading her system too much.  Load these appointments on top of crazy rehearsal schedules to get ready for building dedication at my "other" church, PT changes (since we'll be at clinic during her normal therapy time), and general holiday preparations, I may go nuts.

I am excited that Judith has a new tooth!  Her upper front left tooth made an appearance over the holiday, and it's steadily working its way through her gum.  It'll be a while before it's fully in, but at least it cut through.  She's still teething like crazy though, and there are at least 2-3 other teeth lined up, preparing to come out.  I'm not surprised that she's cutting a bunch at once, but she's also been super cranky because of it - these teeth had better come out quickly for everyone's sake!

Monday, November 21, 2011

1 Year Pictures & Random Party/Holiday Stuff

I know this is the 10,000,000,000th time some of you have seen these, but I'm AWing all over the place, so skip this part if you don't want to look again.  ;)

I got Judith's pictures!  Here's a sampling of the shots:

Judith is such a ham!

Party prep will be in full swing once we get through Thanksgiving.  My mom & I decided to make the cupcakes instead of buying them.  I'm glad I have a reason to use the Pampered Chef easy decorator that I got a couple years ago and haven't taken out of the box yet (you can guess how often I get the chance to bake, let alone do fancy decorating).  I need to get the rest of my pics loaded to Shutterfly, and send them to Target for printing so I can make her photo timeline.  Paper products and decorations need to be bought.  Thank goodness we decided to nix the idea of an organized theme and are keeping things super basic - I'm not a very crafty person, and I'll be the first to admit that I keep putting all of this off to deny the fact that my baby won't really be a baby anymore in just under 2 weeks.

On top of all of this, John & I decided we want to do Christmas cards after all this year.  I need to dress up the peanut, get the dogs positioned, quickly put Judith down, and pray everyone stays in their spot for more than .5 seconds so I can snap a good shot.  I'm definitely not crazy enough to attempt this alone, which means I'll have to wait for John to be here and we'll have to do it in the evening.  I need to get this done, and I want to have everything created and ordered by the end of the week so my neurotic self is sure that people will get the cards in time.  This whole process will be interesting to say the least.

Sunday, November 20, 2011

Cold and Flu Season is Here...

... and we may be fighting off the first cold.  I noticed that Judith has been coughing more toward the end of last week, and after the big weather change Thursday into Friday, it sounded wet.  I called the clinic first thing, and they put her on an antibiotic immediately to help prevent anything else from taking over (they like to treat all CF patients aggressively to ward off any potential problems as soon as they can).  Poor peanut hasn't been herself - she fell asleep on her back twice on Friday, and didn't roll over to settle in like she normally does.  Her appetite has gone to pot, and she's not taking in as much as she was before.  Combined with some major teething, she's turning into a hot mess - not that I blame her.  :(

The first thing I thought of while making the call to Hershey was "Thank God we got her first Synagis shot into her a week and a half prior!"  Any exposure to RSV, and the vaccine will help prevent it from growing further, but I don't think it is RSV since she hasn't had any other symptoms so far.

Anyway, her pulmonologist put her on a Sulfa antibiotic to help with the cough.  Cue a small panic on my part - I'm allergic to all sulfas, so now I have to watch her closely to make sure she doesn't develop a rash.  So far, so good; my allergies didn't turn up until I took it 2 or 3 times, and since this is her first time (I'm assuming - I can't remember if she had any sulfas when she was in the NICU) I'm hoping we'll be good to go.  Trying to get her to take it is a completely different story.  We have a thicker oral injector the pharmacy gave us since she's getting a teaspoon twice a day.  It's a slow process, and we can only give her about 1mL at a time or else she won't take any of it, and even then she still spits some of it out.  Apparently medicinal grape flavor doesn't fool her.  Naturally, she manages to get her hands involved, smearing some of the antibiotic on them, and attempting to stick them in my mouth.  I'm probably overreacting, but I really don't want to run the risk of ingesting some of it and ending up with a bad rash for Thanksgiving.  If I didn't know better, I'd say she's trying to get revenge on me for forcing her to take the stuff.  Only 8 days more of this...

As for the teething front, I am happy to announce that there are some definite bubbles on Judith's gums!  I managed to peek inside her mouth yesterday, and there are some prime spots ready to come through soon, mostly on the upper left side of her mouth.  Oddly enough, it looks like she's cutting her upper canines first, but the other front teeth don't look like they're far behind.  I can see them lined up under the gums, and Judith is gnawing on anything and everything she can get her hands on.  I still hold with the stance that we're lucky in the teething department - so many moms that I talk to seem to have it much worse with their little ones, and I count my blessings that she seems to handle it relatively well (even though it still has to hurt a ton).

Yesterday was super exciting!  I got to meet another one of the wonderful ladies I talk to online, and she took Judith's 1 year photos for us!  She is super talented, and such a nice person to be around - I really hope that we can get together again sometime soon!  Once we get the link for the proofs, I'll post 1 or 2 so you can see the great job she does!

I know this is long already, but I have to share a funny story about the doggies (and frankly, I don't post about them much and feel guilty about that sometimes haha).  John had his laptop at my parents' house, and when we got back from pictures he was working on some church stuff.  He left the laptop running downstairs, and came up briefly to look at a present idea for Judith.  Little peanut needed a diaper change, so I had to run downstairs to get the wipes.  Buster felt the need to follow me down, and next thing I know he's barking at something.  Buster doesn't bark often (not like Lady, who will bark at a speck of dust floating by outside because it dared stray onto her turf), but when he does, it's usually because he doesn't like something (like a cat, another dog, or a rabbit).  I was upstairs, and his barking continued.  My mom asked who was barking, and I said it was Buster!  My grandmother couldn't figure out what he was barking at either; after a few more minutes of this, John finally called him and he ran upstairs.  A couple minutes later, he followed John downstairs, and began barking again.  This time we figured out what the issue was: Buster apparently didn't like the floating balls screen saver on John's laptop, and was barking at it!  He did this once before with a makeup model on one of my magazines, and it was just as funny then as it was yesterday!  He's so weird, but so entertaining at the same time!

Thursday, November 17, 2011

World Prematurity Day (Part 2)

As World Prematurity Day comes to an end, I'd like to share some "Then & Now" pictures of Judith.  I'm opting not to post her birth story today because you will get the full story starting in a week and a half (so stop by on the 29th for the first installment!).

We are so blessed that she has come so far, and is doing as well as she is today!  So without further ado, here are the pictures of our little 29 week miracle:

Judith under the bililight. 1 day old

Judith sitting tall - beautiful baby girl!  11 months old

I would also like to take a moment to express our gratitude to the neonatologists, nurse practitioners, nurses, and the physical therapist at St. Luke's: without them and their care, we would not be where we are today.  The NICU staff is truly wonderful, and we are so thankful for all of the excellent care they provide, and for the neverending support they offer to the parents of the little miracles that pass through the NICU doors!  Thank you, and God bless each one of you!

World Prematurity Day

Today is World Prematurity Day.  It's a day to help bring awareness to premature birth and the struggles these little miracles encounter.  It's a day of honor and remembrance.

Every year, 1 million preemies die worldwide, and 12 million preemies worldwide struggle to survive.

So many complications can plague these tiny, fragile lives.  Some of these complications will have a lifelong impact on the child, others will dissipate over time and with intervention.

I feel blessed that Judith is a survivor.  Things could've turned out differently for us.  I have an additional blessing in my niece, who was also a preemie - things could have been very different for her too.  But through God's grace, both Judith and my niece are doing well today.

There are mothers whom I met on the message boards that have lost their babies that were born too soon.  Today is a day to remember them.

Over the last 11 months, I've had the honor of meeting and getting to know a great group of other preemie mothers, both in the NICU and on the message boards.  It feels wonderful knowing that there are friends who have similar experiences and understand what you go through that you can share your frustrations, joys, and care tips with.  Today is a day to honor these babies.

Help us bring awareness to prematurity.  Share our stories with others.

Thursday, November 10, 2011

Another RSV Season, Another Round of Synagis

It's that time of year again - RSV season officially starts in November here, and that means it's time for the annual Synagis shots.

If there's any "bright spot" to CF (and trust me, I'm using that phrase extremely loosely), it's that Judith automatically qualifies for a full course of shots this year.  If we based it off of her prematurity alone, she would no longer qualify - 29 weekers 6 months and older won't qualify unless the other criteria are met.  Since she has a chronic disease affecting her respiratory system, she gets the shots.

I'm just glad and feel very lucky that we didn't have to battle with either insurance to get them covered.  Whether or not our pediatrician had to appeal for us is unknown to me, but at least we didn't have to panic after receiving a rejection letter from the insurance companies.

Yesterday was Judith's first shot.  They have to weigh the babies before measuring out the dosage, and then they have to determine if the dosage needs to be split into 2 injections - at the end of the season last year, Judith had to be stuck twice because she maxed out for what's allowed in 1 thigh.  This year, we're starting with 2 sticks, 1 in each thigh.  The nurse weighed her, and I was pleased to see that in the last month she's gained about a pound and is about 16 1/2 lbs!  Granted, she was weighed with a wet diaper, so that number is probably a few ounces less, but that's still good for her!  Then we had the fun of the vaccination.  I tried holding Judith down so she wouldn't squirm for the nurse, but she wanted to sit up.  Bad idea.  She was watching the whole thing, and the first needle to go in was a big one.  The nurse had to inject it slowly while I had the honor of experiencing the "sforzando" scream right in my ear (you know, the one that starts with an initial yelp, is silent for a good 30 seconds, and turns into an all-out shriek after a breath is taken).  I'm so glad the 2nd shot was a small one and could be injected quickly.

Judith's a trooper, though, and aside from being sore at the injection site and a little more sleepy than usual, she handled it well.  She's covered for the month, and I actually feel a bit better knowing she has some protection - that doesn't mean I'm going to take her into crowds and let her lick shopping cart handles or anything, but I can also rest my mind knowing that if she is exposed to RSV, the shot will stop it from growing and progressing into something much more serious.

Monday, November 7, 2011

Prematurity Awareness Month - What Not to Say

The Bump finally posted a great article with feedback from fellow preemie moms on the board. You can find the article here.

Many times, people will say something to a preemie mama and to them it's totally innocent.  But to us, it can be a low blow and sting badly.  I know in the past, I've heard some of these comments, and while I would either laugh or ignore them, they still stuck in my mind and hurt.

Hopefully the article will make people more aware of what it's like to be a preemie mama, and people will think twice before making comments like these in the future.

Thursday, November 3, 2011

11 Months

Judith, you are 11 months old today!  In 30 days you'll be 1 year old, and will no longer be an infant - you'll be a toddler.

Here are the highlights from the past month:

* You received your second flu shot, and have some protection for this season.

* Another CF clinic appointment came and went.  The pulmonologist was concerned about your weight gain, so we're trying to push more higher calorie foods.  You had another test for pancreatic function, and everything still looks normal.

* Mommy & Daddy took you to visit some of our former professors from the college we graduated from, and you got to play the pipe organ in the chapel!  You went straight for the trumpet stop - apparently you have a thing for this stop, because it's always one you make a grab for!

* You had your first visit to Zoo America, and got to meet more of the mamas and babies from the message boards!

* We completed another quarterly evaluation for Early Intervention.  You've been in the program for 6 months, and are making great progress!

* You had your hearing test follow-up and passed it again.  The antibiotics you received in the NICU didn't do any damage, and your hearing is normal.

* We had our first tour of the completed building addition at the church Mommy grew up in.  You enjoyed hearing the Shriner German Band play.  Grandma & Grandpa H. were thrilled to carry you around and show off your progress to everyone.

* You won't remember it, but you experienced an historic snowstorm on the 29th.  It's rare that we see accumulating snow at this time of year to begin with, let alone see about 8" fall!

* You had your first Halloween!

* We took you for a follow-up eye appointment.  You don't have strabismus - you have pseudostrabismus, which means your facial structure makes it look like your eyes are crossing when they really aren't.  As you get older, this will go away.  We're still monitoring your farsightedness, but for now you don't need glasses to correct it.

Judith's 11 Month Stats:
Weight: 15 lbs, 8 oz

Length: 26"

Hair & Eye Color: Your hair hasn't changed since last month - in color or quantity.  Your eyes are really starting to change!  There is more brown visible, so I'm guessing you'll have brown eyes like Mommy & Daddy.

Teeth: 2, both on the bottom.  You are teething like crazy again and gnawing on everything, so more are probably on the way!

Clothing Size: Mostly 3-6 month, but we're starting to move you into some 6-9 month sleepers and pants.

Diaper Size: 3

Meals:  You get 5 bottles a day, totaling about 22 oz.  You will still eat fruit purees, but vegetable purees are completely out of the equation.  Most of your meals consist of finger/table foods, and you are starting to try many new things!

Developmental Milestones: You are doing a ton of new things!  You crawl and explore everywhere, you sit unsupported and finally figured out how to push yourself up into a sitting position, you can climb up and down the stairs, you're starting to learn how to wave, your pincer grasp is emerging, you can feed yourself finger foods, you love "talking" to everyone and sound like you're getting ready to say real words, and (much to our surprise during the snowstorm!) you are pulling yourself up into a standing position!  You accomplished 3 of those all within the last week of October (pushing into a sit, pulling to stand, and navigating the stairs) - way to go, big girl!

Sitting tall, unsupported!

Fascinated by the camera lens

Happy 11 months, Judith!

Tuesday, November 1, 2011

November is Prematurity Awareness Month

A happy couple receives the exciting news that they are going to be parents.  They will probably worry about the health of their baby and the health of the mother, but will be looking forward to meeting their goal of delivering a healthy, happy, term baby.  They probably don't think a lot about what would happen if they don't meet that goal.  They're not focused on preparing for anything other than a term baby.  They're not prepared for a preemie.  But they may end up as a statistic, 1 of 8 births.

We are the face of the 1 in 8.

We certainly weren't prepared for a preemie, or for the roller coaster ride of the NICU.

So many different factors contribute to a premature birth: sometimes the cause is known, as it was in our case (severe pre-e and IUGR), sometimes the cause is unknown (some women experience unexplained preterm labor, and their delivery cannot be stopped).  Sometimes the cause is preventable.

The March of Dimes is working to help bring awareness to prematurity, and is helping to try to lower the rate of premature birth in this country.  On their website, they state, "Premature birth costs society more than $26 billion a year and takes a high toll on families.  Babies born just a few weeks early are at risk of severe health problems and lifelong disabilities.  Premature birth is the number 1 killer of newborns." (

We know all too well about the emotional and physical toll that comes with having a preemie.  We're still waiting to see what lasting effects and/or complications Judith may have because of her very early arrival.  We are very fortunate that, so far, she is doing as well as she is - not all preemies are as lucky as she is.

We, and all families of preemies, need your help.  We need you to help spread the word about prematurity.  On November 17, World Prematurity Day, talk to people about the statistics.  Advocate for all preemies.  You can also donate to the March of Dimes at this page on their website.

Our story is one of the over 1400 stories that happen every year.  My prayer is that this number will decrease significantly, and no family will ever have to go through the hell of having their baby arrive too soon.