What We've Been Up To

Mostly, we've been up to being sick. It seems that since December, the girls have been sick constantly with maybe a couple days of wellness scattered throughout...but it never lasts long. 

Mia has this chronic cough that just won't go away. She's been on a few rounds of antibiotics, breathing treatments, and now is finishing a two week course of Singulair at night (which btw, didn't do a darn thing). In a few days I will call Dr. B and let him know that didn't work either. He seems to believe that she is getting sick with good ol' colds/flus, but because of her compromised lungs, that she just can't kick the final bit of it and it just hangs on...and on...and on...and on. I really don't know what the next step is...maybe she needs to be on daily breathing treatments again. She's acting fine--just like her Miss Mia self--but stops to hack up a lung every so often...no biggie. We'll just keep on keepin' on and hope that as cold/flu season comes to a close, we will be able to say good-bye to whatever this is that is hanging on.

Through it all, Juliana has really not dealt with much more than some sniffles, sneezes, green boogers, and very little coughing...until she was hit with pneumonia a week and a half ago. And when I say "hit"...I mean HIT...literally. We dropped Mia off at Physical Therapy, went on our little walk to get bagels and "ice cream juice" (a.k.a. a smoothie) and she jumped the whole way, making sure her shadow was following. Afterwards, we went to Communication Class and she did great--participated, sang, talked, played. We packed them up and headed to Disneyland. She and Mia had a nice nap on the way down to Anaheim and we were in the park by 2:00pm. She complained of being cold, but I dismissed it and figured she was just being silly...after all, it was 80 degrees outside and gorgeous. By 4:00pm, she was tired and asking to nap...hhhhmmm, not Juliana, but okay. When we got to the Pooh ride, we pulled Mia out of the stroller and when I asked J if she wanted to ride, she said, "No, Juji tired." I went to pick her up to try to coax her into riding and sure enough, she was on FIRE. Daddy and Mia went on the ride and I held Juliana as she rested on my shoulder. After the ride, we went to First Aid and found out she had a 102 degree fever. They gave her chewable Tylenol, but she wanted nothing to do with it. I knew we had to get the fever down, so we packed up, trammed it back to the parking structure, and went off in search of a pharmacy. Figures, the first trip I don't pack the Tylenol and Motrin, we need it. Mommy lesson learned. We went straight for the Motrin and it didn't even touch her fever. She just sat in her car seat, half asleep, on fire, miserable. At that point, I just wanted to get her home to hold her and make it all better. 

About half way home, her breathing became really labored and when it reached the point where she was almost gasping for each breath...all while asleep mind you...I knew we needed to go either to the ER or to the Pediatric Urgent Care. I chose the latter knowing there would be no wait and a pediatrician looking at her. They immediately gave her Tylenol, starting the whole Motrin/Tylenol alternating thing and it brought her fever down to 100. Her breathing started to get a little better, but still, she was retracting, nostrils flaring, and wheezing. Next step...chest x-ray. They called in an x-ray tech (they have their own machine...nice) and he was there in 10 minutes.  After some "struggles" to get the x-ray (Robert ended up having to hold her wrists and hang her in front of the stand-up part while she kicked and screamed), they got an image, a bit blurry due to "movement"...uh, yeah, but clear enough to show pneumonia on the right side. We started antibiotics immediately and went home. Phew. Within 48 hours, she was back to her old self. The debate of whether it was bacterial or viral pneumonia remains to be settled. And now, she has this horrible cough...just like Mia's. They sound terrible.

To make matters worse, they are both teething. Yes, TEETHING at 2 1/2. Juliana has yet to get her upper and lower 2-year molars and Mia is still missing an eye tooth and her 2- year molars. The runny noses, low grade fevers, and crankiness of this week has led us to believe the teeth might be trying to make their fashionably late appearance. 

I will end with another update (a detailed post will follow tomorrow...I really need to get to bed). I had the girls' Transition IFSP on Monday, with their Regional Center case worker who manages their early intervention services and the preschool special ed coordinator for the 3 school districts out here in SCV. I'll leave you with the preschool special ed coordinator's first comment to me after introducing herself:

"Uh, to be honest, I really don't even know why I'm here." 

:) 

One Step at a Time

It's hard to believe that another year has come and we are gearing up for our annual March for Babies walk. It will be our third year participating and while we know things are a little tight for everyone, we hope you will be moved to sponsor us and help in any way you can.

Most of you know our story, but there are also those that do not if you have "joined us recently." I have yet to transfer a lot of the content from the old website, so I'll catch you up here.

When we found out we were pregnant in March of 2006, we were completely overjoyed, but also worried that this pregnancy wouldn't last, like so many others. I was already spotting, which is what prompted the home pregnancy tests in the first place. You see, those things scare the **** out me. I figured it was over, the FET didn't work and AF was on her way (I know I just threw a lot of infertility lingo/abbreviations at you, but it's how my people "talk"). My blood test wasn't until the 20th--this would just "let me down easy" (as if hearing for the 40th time the cycle was a bust would ever be easy).

So here I am, with a positive HPT and then sure enough on the 20th, my bloodtest came back sky high. Now for those of you who know about beta hCG numbers, you know that a high number does not automatically mean twins or more...but, it certainly makes you start thinking. Two weeks later (I was still spotting mind you) our suspicions would be confirmed when the ultrasound showed two beautiful little sacs and fetal poles...twins indeed! I was in good health, but apparently pregnancy was just not gong to be easy...nothing around here ever is.

In the first trimester alone I would have two major bleeds from two separate SCHs (subchorionic hematomas...I'll give you that one). The second would have me sent to the hospital in an ambulance, from work no less, as I practically bled out in the school office staff bathroom and on the stretcher. I can't tell you what a horrific scene it was. Blood was literally pouring out of me...clots the size of golf balls. After spending the next 3 hours at the hospital waiting for an ultrasound, waiting to see if I was still pregnant, we would discover that miraculously, the babies were just perfect. Praise God. During that very same ultrasound, my terribly shortened and dilating cervix would be discovered...however not by the on-call OB at the hospital, but by my RE the next day as he looked over the ultrasound images sent to him via DVD. So by accident, mere chance, we discovered that I had an incompetent cervix. I am certain that God had his hand in those SCHs, for without them, my girls would most likely not be here today. Three days after this massive bleed, I would have an emergency cerclage (a stitch sewn around and through my cervix to hold it closed) and subsequently spend the next 12 weeks on strict bedrest at home.

Surprisingly, things were rather uneventful until I hit 24 weeks. Of course there were a few bumps here and there and I worried every minute of every day, but ultimately, we were okay and we were close to viability. Any type of sitting, standing, walking, would cause a perpetual contraction...rock hard uterus...and it simply wouldn't release or let go until I laid down on my left side...hence, why I remained in that position for the better part of those 12 weeks.

To our dismay, the threat of my incompetent cervix quickly shifted to preterm labor as I began to have regular contractions and an odd discharge (which I would later learn was most likely my mucous plug...ewww). At 24 weeks, 3 days, I was hospitalized and received steroid shots to help the babies' lungs mature should they need to be delivered in the next few weeks. I also was given various medications to stop the contractions, however with each week, the meds would wear out and a new med would be added or take it's place. At 27 weeks I was maxed out on magnesium sulfate with terbutaline booster shots as needed to keep my otherwise irritable uterus, calm. Ha.

On August 27, 2006, 27 weeks, 2 days, the two medications that were keeping my contractions at bay, simply stopped working. I had received two terb booster shots dangerously close to one another and still, they did nothing. Despite every effort made by the hospital staff, we would meet our precious babies later that Sunday night. Of course, as luck would have it, my OB who had been with me since the age of 16, was on vacation for the first time in his career...200 miles away and not returning calls. Hhhhm, can I say, panic much? His newly acquired partner, would make the call to deliver our babies despite my pleading to give them just a little more time. But that was just it...we didn't have any more time. I was dilated to 2cm with the cerclage in and risked complete rupture of my uterus and cervix if we didn't deliver soon. Once the hospital had called in and assembled all necessary personnel (remember, this is Sunday night when things are supposed to be quiet), we headed to the OR.

As they prepped me for an emergency c-section, we prayed over and over that we would hear our little babies' cries, though we were told not to expect to hear anything at all. At 11:17pm, Juliana Faith entered the world CRYING at 2 lbs., 2 oz. and one minute later, Mia Therese made her entrance, CRYING as well, at 2 lbs., 1 oz.

Juliana was intubated and on a ventilator for 4 days; Mia was also intubated and on a ventilator, but for only 36 hours. The girls would stay in the NICU for 84 and 83 days...days which were filled with fear, hope, anxiety, happiness, frustration, and many tears. Both girls endured apnea of prematurity, multiple infections, slow weight gain, sepsis, NEC, ROP, close to 10 blood transfusions, countless IV lines, and feeding difficulties. Still, they would come home the week before their due date. To our amazement, they did not need any medications or apnea monitors...a truly miraculous feat for 27 weekers.

Today, Juliana and Mia are happy, thriving 2 1/2 year olds, with few lasting effects of their early birth. Juliana has some sensory issues (doesn't like certain textures on hands/feet and certain noises still startle her, sending her into complete hysterics) and Mia has low muscle tone (weak and lacks endurance) which is why physical therapy is so important for her.

But that is it...thank God.

The money we raise for the March of Dimes will go towards finding the reasons WHY a perfectly healthy woman, receiving outstanding prenatal care, has numerous complications and HOW to address them so that every baby is given the 9 months inside the womb that he or she so desperately needs. The money also funds research that develops advancement in treatments that can be offered to preemies...that may very well save their lives.

I can go on and on why this organization is so incredible and why donating to its cause is so very important. But this is something that touched me personally, while pregnant trying desperately to keep my babies from being born too soon, and after my girls were born, struggling to survive during their 3 month NICU stay.

I can only hope that our story, like that of so many others', touches you and moves you as well.

Please, help us save babies...

...walk with us,

...donate with us,

...help us get there,

...one step at a time.

**When viewing the montage, scroll down to the bottom of my blog to mute the blog music first so you can hear the montage music.

For the record...

My dear friends and family, you are all too sweet...thinking I'm pregnant!

I thought that entry might throw a few of you...notice the post title though:

3.18.06

3 years ago...but gosh...how I wish it were this year as well.

Hoping and praying we'll get another chance...

3.18.06

4:30a.m.

I woke up having to pee sooooo badly. But I couldn’t. I was 15dpo…spotting…but thought, “Let’s just do this…get it over with…POAS and see that BFN, and go back to bed.” My beta wasn’t for two days. Yep…my crazy doctor thought I could make it that long…17dpo? Seriously? Robert was sound asleep. So I snuck out of bed, head hanging low, so scared to do what I knew I had to do to just put me out of my misery and move on to the next cycle.

I went to the guest bathroom where we were all set up…all the syringes, the meds, the heating pad, swabs, oh…and always a few HPTs. I had two—a digital and one of your blue line tests. So I quickly peed in a cup, unwrapped the two tests, and dipped the blue line test in first…30 seconds, then you have to wait 3 minutes before you can look at the test. I laid it on the counter and glanced at the clock…3 minutes. Here we go.

I turned around, stared at the ceiling, tears filled my eyes because I wasn’t ready to see the result…I wasn’t ready for another failed cycle.

2 minutes to go…

I started pacing, hands clasped, praying quietly, “Please God…I know it’s probably negative, but please, please, please, please…let it be…let it be…let it be.”

1 minute to go…

Fighting back the tears, pulling it together, trying to get ready to accept the BFN…again. “Please God, please, please, please, please…”

Time is up.

I turned around, picked up the test and lo and behold…TWO blue lines…POSITIVE. I clutched the test (pee and all), fell to the ground, and cried hysterically, “Thank you God, thank you, thank you, thank you…”

I think I sat there on the floor in a puddle of tears for about 20 minutes. Crying, praying, crying, laughing, crying. And what did I do next? Dipped the digital. Oh yes…I had to confirm it and see the word(s). 3 minutes later, “Pregnant.” I just smiled, looked up and again, “Thank you God.”

After that, I cleaned up the bathroom, laid the two tests side by side, and like a good infertile…pulled out the camera…photo op, right? I then snuck back into bed, snuggled up next to Robert, he hardly moved, but made a noise so I knew he was at least slightly coherent. I whispered in his ear, “We’re pregnant.” He opened his eyes, kissed me, smiled, and he held me so very tight…put his hand on my belly and we fell back to sleep in each other’s arms, the weight of the world lifted off our shoulders…even if only for a moment. We’d been here many times before, only to have it taken away all too quickly. But this time felt different, very different…and I knew we’d be okay.

It was an amazing day. A day that brought a smile to my face…where it had been missed for so very long.

One year ago...

One year ago, two precious little boys were born...4 months early. Today Blake and Ethan should be turning one, but instead, their mommy, daddy, and big sister are missing them so very, very much. Those two little boys, in their 2 and 3 days here on earth, touched countless lives and forever changed us all.

Happy birthday Blake and Ethan. I know you are taking care of your mommy, daddy, and sister from a far, but wish so deeply you could be here with them. I know they look forward to the day when you will be together again.

Friends and family...join me in lifting Devon, Rob, and Riley up in prayer...holding them ever so close as they relive every second, every minute of this week last year--the week their boys came into their lives and left far too soon.

Two and a Half

It happened...the girls are officially 2 1/2 (on 2/27).

Gulp.

As I sit here, Juliana is serenading me with a remix version of "Twinkle Twinkle Little Star." Mia is picking up puzzle pieces of letters and saying the name of each letter. These aren't babies, they are little girls. To say I am having a hard time with my babies growing up would be an understatement. It's a huge milestone and much more than just my little 2 pound miracles getting older.

For four years all we wanted was a baby, and then we were blessed with two. Everything went far too quickly (in hindsight, mind you, because when I was in the thick of it, it felt more like an eternity), from my short 27 week pregnancy, to their infancy, baby stage, and now toddlerhood. Pretty soon I will have two preschoolers on my hands...two THREE year olds. And it all happened in the blink of an eye.

So where are they at now and what are they doing developmentally? We've just finished all of their assessments: speech, fine-motor, gross-motor, and child development (cognitive, social-emotional, self-help). I don't have all of the results yet, but it appears that Juliana is functioning between the 30-36 month age range for speech, fine-motor, gross-motor, and child-development...uh, which means across the board, she is caught up completely to her actual age and is even ahead in a few areas. Mia is also functioning between the 30-36 month age range in speech, fine-motor, and child development and actually is closer to the 36 month level in most things. The one area Mia continues to be delayed in is gross-motor skills. Her low muscle tone as a result of being born so early has her struggling with things that 2 year olds do, like jumping, going up and down stairs independently, and walking on a beam (I know, I know...how many 2 years walk on a beam on a daily basis). She is at least at the 21 month age range in everything and actually has skills scattered up to the 30 month level. In other words, she is all over the map in her gross-motor skills. Some things she is right on track, others she is a little behind, and still others, she is a lot behind. We are certain she will continue with physical therapy once a week indefinitely. I kinda' feel like she'll be doing this for years to come. As for all of their other services, technically, they should be booted from Early Intervention. We will see what Regional Center has to say as their caseworker makes the final decisions regarding services the girls qualify for AND that the state has funding for...ha, ha, ha. Our transitional IFSP meeting is on 3/23 and we will see what happens.