2018 Congenital Heart Walk

Congenital_Heart_Walk_6-color_Spot.png

We’re participating in the 2018 Congenital Heart Walk in honor of our little heart warrior-survivor, Clementine. We are thankful for any donations and support (link below) towards research and treatment of congenital heart disease for people of all ages.

* donate button links to Clementine’s personal donation page at congenitalheartwalk.org
payments are processed through Blackbaud | donations are tax-deductible
thank you! ♥


Clem-chd-walk2.jpg

Oh My Darling, Clementine!

FULL AUDIO VERSION (lyrics below):


Late in August, born a miracle
In a cove, by the tides
Dwelt a mama and a dada
And their daughter Clementine


Oh my darling, oh my darling,
Oh my darling, Clementine!
You are lovely and so pretty
and I love you, Clementine


Bright she is and like a Wowdy,
And her smile like sunshine
Dancing round like a ballerina
Happy, laughing Clementine


Oh my darling, oh my darling,
Oh my darling, Clementine!
You are sweet and oh so yummy
I love you, Clementine


playing shy, little giggles
Waving hi to everyone
bringing joy to all who meet you
Making friends and having fun


Oh my darling, oh my darling,
Oh my darling, Clementine!
You are a silly, happy baby
I love you, Clementine


Reading books and climbing walls
With your sparkly eager eyes
so rambunctious and curious
Perfect combo, my Clementine


Oh my darling, oh my darling,
Oh my darling, Clementine!
You are spunky and so funny
I love you Clementine


How I love her! How I love her,
How I love my Clementine,
Love to kiss her on the tummy
and I love my baby Clementine. 


Oh my darling, oh my darling,
Oh my darling, Clementine!
You are precious and I am grateful
just to call you my Clementine


Yes I love you now and forever
You are always my Clementine
 

- Val Emmich & Kathleen C.

Homestretch


It's been a while!

To start with the latest news — tomorrow, we go for another ultrasound to check my amniotic fluid levels. Over the past few weeks, my AFI has dropped from 8cm on Aug 1st to 3.79 yesterday (levels under 5cm are concerning). We've been to the Antepartum Testing Unit about 2x a week for ultrasounds and fetal heart rate / stress test monitoring since the beginning of August.

We've almost been admitted on the last few occasions, however, they managed to eek out a 2cm pocket each time, and Clementine is still growing and doing well, so they keep sending me home in hopes that I'll get a little further along and then go into labor naturally. Also, I'm at 38 weeks and 2 days now, and as much as they would like to avoid inducing, they try to hold off for 39 weeks as well.

So we go back tomorrow the ATU for another ultrasound, and if I'm not admitted, and I don't go into labor before Friday, the plan is that we go to the OB Friday, and then Saturday we have an appointment at Labor & Delivery at 3:30pm — and we'll start the ball rolling to welcome Clementine into the world! (Our first wedding anniversary is Sunday so maybe she'll decide to make the day extra sweet! also cake - so very excited, a year has been a long time to wait! Thanks again Lisa for that beautiful, delicious wedding gift!)

We just had another growth ultrasound on Friday, 8/14 and she's about 6 pounds, her tummy's average size, and everything else is a few weeks behind average — it's so reassuring how much she's grown! She's still my little peanut though <3

I've been having a lot of Braxton Hicks contractions lately, it's so funny to see my belly tighten up in a little mound, giving Clem hugs. Now for the real ones, bring it on!

On July 28th, we had our third and last Fetal Echocardiogram and the Pediatric Cardiologist was happy with how her AV Canal was looking so she did not order a NICU stay for cardiac reasons — truly exciting news. We are so hoping we can keep Clem in the room with us and have a lot of skin-to-skin and nursing time together! Of course, she'll have her first echocardiogram shortly after birth, etc. to make sure that she's doing well.

My mommy got here on Tuesday, the 12th, and we've been busy trying to get last minute stuff for baby and finish the house (still so much left to do)! I am thankful that Clem did not come before she got here, and that my mama had a safe flight.

Mama spent the first few days making little bear and bunny organic french terry washcloths for Clementine <3 they turned out so well!

Sunday, August 17th, 2014 was a beautiful day, so we went out and took a few baby belly bump pictures.

We are so thankful that we've all made it this far. It feels like forever since April when we were told to expect the worst. And here were are with our beautiful little miracle, wiggling and hiccuping and days away from being in our arms. I cannot imagine life without this precious gift (as all babies are beautiful miraculous gifts) and I am so moved by how much strength God has given our baby to endure and thrive. We continue to pray for her healing and her future, and praise His name for all He has done to take good care of her since He blessed us with her little flickering heartbeat!

38 weeks & 2 days | 12 days to go!

Baby Gifts <3


thank you so much!! xoxo

Nana & Papa C.

Nana & Papa C.

+ bassinet & changing table!

Uncle David, Auntie Nichole, Livi & Tori

Geri

Drew & Claire

Grandpa & Grandma D. + carseat so Clementine can come home!

Great-Grandma <3

Nana's friend, Elaine

Nana's friend, Carol

Nana's friends, Anne & Tim

Grandma's friend, Donna & her family

Christie & Craig

Linda & Danny

The Lee Family

Daddy's friends

Pete, Diane & David

Karly & Kennady

Renata, Stefanie & Gary

Bella's friend, Mia's family

Maternal Fetal Medicine Dept.

State Farm

Squarespace Family

Andrea

Andrea's parents

Andrea's parents

also a warm thank you to Uncle Bud!

Thank you to my Mommy for all the cute, beautiful, educational, wonderful things she's gotten to spoil Clementine, and all the yummy food she's made to keep her happy and wiggly!

MRI Study of Fetuses with Down Syndrome* | Tufts Medical Center


Monday, June 16th, 2014

We had an appointment with our obstetrician and I got my gestational diabetes test results back: blood-glucose level of 113mg/dL - which is thankfully much lower than the 130-140mg/dL cutoff.

Turns out that I'm pretty iron deficient though, so now I'm on iron supplements. And here I thought I felt half-dead all the time just because pregnancy (and severe reluctance to packing up and moving)..

29 weeks & 2 days | 75 days to go!

Friday, June 20th, 2014

We went up to Boston so Clementine could participate in an MRI Study. Mark started our day with a 9:30 a.m. work meeting on Staten Island. It was a first for both of us to be in all 5 boroughs in one day, even before lunchtime! We started off at 6 a.m. in Nassau Country then made it to Queens --> Brooklyn --> Staten Island --> Brooklyn --> Manhattan --> Bronx.. and all the way up to Beantown!

We also went over 3 bridges - the Verrazano, Brooklyn and RFK/Triboro.

Naturally, we hit traffic the entire way up to Boston and were half an hour late for our appointment — but it was such a gorgeous day!

 
image.jpg
 

The MRI machine I was in was ungodly hot and confined. I made it almost an hour before I bugged out. Lies. I started panicking the instant I started moving in. However, I managed to last much, much, much longer than I would have. But I felt like I was being roasted alive. And of course, I love feeling my little Clem kicking around, however this time Mommy was willing her to stay still! Let's cooperate just this once, sweetie, so we can get out of here! Haha, like that happened:

Suboptimal evaluation secondary to inadequate patient/fetal positioning and premature termination of the exam.

Like mother, like daughter. We're full of the cooperations.

Mark said he was very proud of me and that I stuck it out much longer than he thought I would and much longer than he thought he could. "The Lord is my strength!"

Afterward, we went across the street to catch the Honduras/Ecuador game. 

 

The After Picture

 

Then we made our way to Mark's parents' house. It was so nice to sit up and visit with them. The last time we saw them was when Mark's daughters sang at Carnegie Hall and that was a quick afternoon.

The next day we had dinner out with his parents and his brother's family. It was wonderful getting to share that time with them!

Then we loaded up a moving truck with the guest bedroom furniture Mark's parents generously gave us - and made the long trip back to New York - Mark in the 10' Uhaul, and me following behind in the Prius.

 

 

6/22/14 Home from Boston | Mark's snoozing, Clementine's wiggling. The blessed life. <3

 

I got preliminary results back from the study: Clementine's "brain structure appears to be fine." That sounds promising!

However, they also found that I have bilateral hydronephrosis — which is the swelling of my kidneys (left more than right) due to a build-up of urine. The doctor thinks in my case it's due to more urine production in response to my increased blood volume (pregnancy); it's usually also due to inadequate drainage. Not exactly surprising given my golf-ball sized bladder. Here's hoping I don't burst before Clementine's ready to come out!

* About the Study:

The ultimate goal is to develop prenatal treatments for babies with Down Syndrome — focusing on brain development. Clementine's participation is as a "baseline" untreated fetus.

They're looking to identify which genes are turned on and off in fetuses with brain malformations - this will help them determine how genes are expressed (malformations / abnormal development) and the risk of neurological issues. It's their hope they'll be able to provide treatment in utero to babies with Down Syndrome to help preserve brain function and healthy development.

And on a happy note, here's a People Magazine article about a precious Miracle Baby who survived Hydrops Fetalis and other serious health issues and beat overwhelming odds to turn two last week. Happy Birthday, Cutie Renner! Clementine did a little wiggle dance to celebrate in your honor! Thanks to Jessica W. for sharing that with me! <3

29 weeks & 6 days | 71 days to go!

Happy Father's Day, Mark!! <3


Originals by Kim Casali Conceived and drawn by Bill Asprey © 2007 - 2014&nbsp; LoveIsComix.com .

Originals by Kim Casali
Conceived and drawn by Bill Asprey
© 2007 - 2014 LoveIsComix.com.

To my handsome husband, my sweet man —

We're 29 weeks today!!

Thank you for your never-ending love and support. I am so excited for this new chapter of our lives together, one in which we can share in Clementine's beautiful life. I am so thankful and honored to have you to be her Daddy - how very blessed we all are!

I love you!! <3

29 weeks | 77 days to go!

Visit to the NICU and Check-up Ultrasound


Today we had an early morning visit to the Neonatal Intensive Care Unit at the children's hospital. It was a little rainy out - as most of our trips there have been.

We got to meet with the head of the NICU department. He was so nice and reassuring. He told us lots of personal stories and anecdotes as he walked us through the unit. The area Clementine will most likely be for the first few days is the new area of the NICU. If she is stable but does need to stay longer, she'll be transferred to the older part of the NICU. (He said that the PICU - where Clem will be after her heart surgery - will be very modern.)

He said reviewing her charts, all they're going to do is monitor her oxygen, make sure she's eating, basic things. This is in addition to the pediatric cardiologist doing the fetal echo and all those other wonderful things to make sure she gets the care she needs / determines she's well enough to come home. He did not foresee her needing to be hooked up, or being there too long. I can even go down and breast-feed, if her muscle tone allows for it. So that was super relieving.

While I'm incapable of using any intelligible words to describe seeing little babies in the incubators (instead of being completely healthy and in their loved ones' arms) - I can say this NICU is a really peaceful place and it felt good - as far as seeing the staff all very hands-on, almost every baby had someone bedside. It was comforting, the level of care and attentiveness and also having the doctor be so wonderfully calm, positive and reassuring doesn't hurt. It felt safe, like all those babies were doing great and were going to be great and live happily ever after.

Then we made our way to the Antepartum Testing Unit (ATU) where we had another ultrasound. After having had another fetal echocardiogram, these are like lickety-split super fast! I forgot how quickly they're able to check all the organs and be done (I had to go to the bathroom! ha and they prefer you don't until they're done sooo.. that's why I'm all yay!)

Another new doctor came in and he showed us the ears - so cute. He said her weight is currently 2 lb 8 oz which is pretty average for 28-29 weeks -- and our little one is truly little - the measurement of her femur puts her in the fifth percentile (which I guess depending on your camp is reflective of Down Syndrome (some use it as a soft marker, some think it's not indicative)). The miracle continues, the hydrops is still gone.

All is well though - today she wasn't too shy and in fact felt rather cheeky - while the doctor was just going over a few things with the transducer, she gave him a big kick in the hand. That's my girl <3

Thank the Lord for another wonderful doctor's visit - lots of peace and reassurance! For the wonderful care He's taking of our baby girl and helping her grow everyday!

Also, I'd like to thank our 2 patient coordinators/navigators - one from the ATU/NICU and the other in the pediatric cardiology department - both have been so wonderfully kind and helpful!

28 weeks & 5 days | 79 days to go!

27 Weeks.. Third Trimester.. Crunch Time!!


My pregnancy has been such a rollercoaster. Mark and I both have been knocked down and lifted up so many times over the first two trimesters, that we've clung to a day-by-day mentality. Most of which has sadly taken some of the joy and excitement out of expecting a baby! .. and the prep that goes into it. It dawned on us leaving the cardiologist yesterday that we need to get into Lamaze / Childbirth classes! I am just so focused on Clementine being with us every day, that I sort of block out the inevitability of labor and delivery.. Part of me was somewhat expecting a Cesarean section given the issues she had early on.. and now.. oh my goodness. it's on!

Tonight, I painted for the first time in such a long, long, long time — and when Mark got home we did some online shopping for our girl! Up until this point, I had only bought her some organic cotton blankets. We went through and picked out onesies and hats with little bear ears, and a few other adorable rompers and bundlers — and it felt so good and so real.

Even though she won't have a nursery of her own for a while, once we move and make a little space for her, and get all the other necessities together, that will definitely make show-time much more real and exciting.

I am also just bursting to meet her! I love her so much. But I'm trying to stay calm. I don't want her to be like her Daddy and me, being hasty and crash the party too soon! She needs to keep being an adorable, sugary-sweet bun in my oven for at least another 2.9 months! Seriously. (I still can't wait to kiss her little feets, and hold her and love on her! She's going to be so amazing!)

<3

Every good gift and every perfect gift is from above, coming down from the Father of lights..
— James 1:17

Baby's First Clothes <3

27 weeks & 2 days | 89 days to go!

Second Fetal Echocardiogram | 27 Weeks, 1 Day


Today was our second echocardiogram. A little shy of 8 weeks after the first..

I started the day redoing the Gestational Diabetes test, since the OB office was so busy during my appointment on Friday they forgot to draw my blood after an hour and by the time I was taken back, it was way too late. Thankfully, Mark was with me this time. The Sun-Dex was just as gnarly as I had remembered though (if anything could put someone in a foul mood, it would be that stuff). I was so relieved to have it over with, I was practically walking on air leaving the office.

Then we went the children's hospital for the follow-up fetal echocardiogram. We had two technicians - one was recently brought in and she was training with another more senior tech to learn the hospital's protocol. It was amusing listening to them talk about the different angles of the heart they were getting, "oh that's gorgeous," "that's just beautiful." Thankfully, Clementine was cooperating so they could get the needed captures, despite having tucked herself into a far corner of my insides. The senior tech was saying how she had all this space to hang out in and there she was wedged away hiding. The newer tech was like, "oh my goodness, I feel something against my hand, I think it's her shoulder!"

When we went to sit with the pediatric cardiologist, who we had met previously, she immediately said how wonderful it was to see us, and called Clementine a "miracle baby." She went on to say that we were all going to forget the first conversation we had, and start completely over. The mood was lighter. There was more laughter. It was such a different experience. She reassured us that the longer Clementine stays in the better, and that we can expect to have natural birth around her due date barring any non-cardiac complications. It felt really good to have much more optimism despite the overwhelmingness of the situation. I cannot begin to wrap my mind around my little one having open heart surgery.

We then met with the Chief of Pediatric Cardiothoracic surgeon. He was pretty straight-forward about the procedure, explained the risks (pacemaker, mortality.. sigh.. I can't even..), what we can expect pre- and post-op. It was very comprehensive in a down-to-earth way, which I appreciated since being on this side of the desk brings a sort of deer-in-the-headlights reaction to even "hello." He was very personable, and we had a nice conversation aside from the surgery. Again, he reassured us that as long as there were no other complications - Clementine could come home with us, and would most likely have surgery sometime before Thanksgiving.

The little details?

We're scheduled for another fetal echo when I'm 35 weeks - this will allow them to get a good look at her heart and arteries right before birth. (If she's born before then, she'll be premature, and will be in the NICU anyway, so they'll keep a close eye on her in that case as well).

At birth, from a cardio standpoint, she'll be taken to have another echocardiogram, just to make sure all is well and that there's no Coarctation of the Aorta (narrowing/blockage). If there is a blockage, she'll immediately have at least surgery to correct this, as it would prevent necessary blood flow. If this surgery takes place, they would then determine if they would like to do the AV Canal surgery as well. Coarctation is rare, and both doctors said that while her Aorta does look a bit narrow, it's probably unlikely that she'll have this.

Once she comes home with us, she'll be like any other baby. We'll check in with our pediatric cardiologist and a pediatrician that she feels confident working with, so we'll have those two resources to help monitor her well-being. However, in as few as 10 days to a few weeks she'll go into "heart failure" which they reassured us is not as scary as it sounds. It's the name for the condition - but it doesn't necessarily mean the heart is going to just stop. Her breathing may quicken, and since she's burning more calories through respiration, she'll get tired more easily and won't gain as much weight - fluid might start building up in her lungs, etc. Once this happens, she'll go on water pills and possibly some other medications to help with her heart pressure, fluid retention, possibly special formula to help her keep growing, etc. Then we'll schedule the surgery for a few weeks later.

The tricky part is the timing. Her birth is shortly before Respiratory Syncytial Virus (RSV) Season. Since there's that vulnerability to infection when heart conditions are present, there's a chance that she'll go into surgery before or shortly after this season begins - hence, before Thanksgiving. The cardiothoracic surgeon said that with AV Canal, babies usually have this surgery between 3-6 months regardless of how they're doing. They try to get this done before 6 months because of a build up of lung pressure due to the defect. Also, the vaccination for RSV is not 100% - it may help lower her risk of getting sick or at least lessen the severity - and she would need this once a month, and it's quite costly.

As far as the surgery goes, a pediatric anesthesiologist will put her under, then they'll get her all prepped. Right before, during, and after surgery, they'll have the echocardiogram going. They'll have her on a Cardiopulmonary bypass machine while they operate on her heart. They'll add Gortex to patch the hole between her two bottom chambers, and a graft of her tissue for the upper, and then repair the valves. Before they're done, another echocardiogram will be done just to ensure there's no lingering leakage etc. and then she'll be in PICU for about 1-2 weeks (average). We'll get to stay with her though - we'll have a room with a bed, so we can be by her side during her recovery time there.

Then we'll have a lifelong relationship with a cardiologist. I find that comforting, however, to have periodic check-ups just to make sure everything looks well.

I am just so thankful everyday for her little wiggles, and the little moments where we see her personality shine through. Thank you God for another small victory on Clementine's behalf. Thank You for keeping her strong and growing, and giving her a bright future. <3

27 weeks & 1 day | 90 days to go!

We're Moving!


In a related, but not completely Clementine-centric event — a few weeks ago we decided not to renew our lease for our current apartment. While we do love our place, with Clementine and Mark's girls, and my hoards of paper and books, we really cannot stay. The thought of moving by July 20th is especially daunting, with the higher risk of Clementine coming early and the unknown amount of care she'll need when she gets here - and the end of July though early is not out of the ordinary for delivery. (Her expected due date is 8/31/14).

My greatest concern was getting down to the wire and being homeless with everything else going on. Of course that's a bit dramatic, however, relinquishing the guarantee of one place without another place lined up definitely takes a leap of faith - and one that I took (shocking! Thanks Mark for holding my hand and having enough faith for both of us to get me to sign that paper! translation: dragging me off the ledge with you! ;)

We went to look at a handful of houses, this is after weeks of me combing through every app and website in existence. I actually went by the house we were considering and did not see a sign out front so I originally gave up on it.. but the relentless thought of how perfect of it was got me to actually dial a phone (if you know me, getting me on the phone is one of the rarest occurrences in nature). It was still available! So we went for a viewing, and Mark's youngest and I fell in love instantly - she's been my "shopping" buddy the past few outings :) We really did though. The thought of everyone having their own rooms for years to come, and a backyard with a little garden, and the beach down the road from us - in between two Starbucks, two Whole Foods and 2 minutes from our current place for ease of moving - it was just perfect.

We applied. And did not hear anything back for a few days. If I was still a nail-biter, I would've been down to my palms.. and then the phone rang. "The landlord is coming back tomorrow, so I'm going to give her your application and if she's interested, we'll plan a meeting." A few more days go by and, "How does Sunday at noon work?" It works wonderfully, ever so so so very wonderfully!

So we went back to the house and met her. She's the most darling person - and it's a little community of neighbors, something I haven't had since I left South Carolina. It was just the best feeling on such a beautiful day. We stood in the sunshine in the backyard and chatted. The landlady gave me a tour of her beautiful garden of raspberries, honeysuckles, forget-me-nots and other flowers and plants. Having outdoor space again is just so exciting, and this little backyard is so peaceful with birds chirping and pretty flowers, trees, and plants lining it. Love.

We sign the lease on Friday. For three full years. The amount of relief that we feel - Mark and I - to know that we can have all our girls under one roof, and our parents, and any other guests for years to come without having to move again or search for a place - until we're ready to really settle down and get our own home — priceless. Oh, and did I mention the landlady was like, and when she's big enough you can put in a swing set - I did not even have to ask, it's just so meant to be. And a puppy in the future. And a fireplace. And a garden. I'm gushing. It's just really exciting. Moving now will ensure that we're settled and can focus on Clementine and her needs and grow our life together without any other distractions for a long time to come!

Thank you, Lord for answered prayers! And thank you for our family and their endless support <3


It was such a beautiful day that we thought it would be a shame to waste, so we came home made a picnic (homemade Vitamix hummus, Caprese salad) and went to the park where we sat and watched the boats and kicked the soccer ball around.

The Park / Beach

The Park / Beach

caprese salad / pizza on naan &amp; homemade hummus in the Vitamix

caprese salad / pizza on naan & homemade hummus in the Vitamix

26 weeks | 98 days to go!

Growth Ultrasound, 1 Month Later


After all that we had been through from April 4th to April 23rd, with the Hydrops scare and all the uncertainty and the heartache that it caused — the doctors felt confident that her remission would allow her to grow normally enough to go a whole month without a check-up. This past month was a little nerve-wracking, just because we wanted to make sure that her Hydrops hadn't returned, that she was growing through the expected growth spurt, that all her organs and faculties were developing as they should. The unwavering love God has showered on our girl has brought us so much comfort - as well as her tenacity. She greets me every morning with wiggles, reminds me that she's there with some pretty good thumps and then wiggles as I fall asleep. And it's the most beautiful feeling I have ever known, even if it's as though I've swallowed a protesting Gremlin sometimes :)

So this morning we went to our appointment, heads swimming but eager and trusting for good news. She was very wiggly all day long and as per usual, very camera shy. The technician would try to get her to move/roll over, and Clementine would wave her little hands in front of her face like "shoooo!" Darling girl. They were finally able to get a few shots of her face using the 3D option:

Do I look like Mommy or Daddy?

Do I look like Mommy or Daddy?

It's so unbelievable, a) seeing our little girl's "face" and b) the technology behind turning bouncing waves into blobs then sharpening those into a little person. Crazy.

A new doctor came in today - she specializes in genetics I believe. She was telling us about some research studies on Down Syndrome -- one was for Dr. Diana Bianchi and a study on mice that a certain injection made affected mice have better muscle tone and cognitive ability. The other was a study at Tufts Medical Center that we could participate in that would use MRI to do fetal imagining of our girl to understand more about development of her brain.

This doctor reminded us of my mother - she was very excited about what she was seeing in the ultrasound - pointed out different things with amusement and enthusiasm. Working the 3D ultrasound she made jokes about how this job made her a photographer. She was tickled when she pointed out that Clementine had the hiccups! Mark and I thought that was absolutely the cutest thing, to see the little hiccups (even though I am totally sympathetic to how annoying they are - to see our teeny tiny little one hiccuping, it makes her so real :)

One month later, the Hydrops is still gone. The doctor said that her organs looked good, she's average size now (she was super tiny when she had the 18 week ultrasound..) and her AV Canal looks "balanced" -- which I suppose that's a good thing as far as heart defects go. She did say that the Hydrops could return, so please continue to pray that it does not - without that hindering her, Clementine has made huge leaps and bounds in the past month. We hope she continues to be well and do well.

We have our appointment for the second fetal echocardiogram on June 2nd - and we actually sit down with the pediatric cardiothoracic surgeon then to figure out what their plans are. I can only hope and pray that they think she'll be well enough to come home with us for a while after delivery before any surgeries, however, whatever she needs is what will happen.

Thank You Lord for the never ending blessings you've given our Clementine and us through all the miracles we see in her. And thank you all for your continued love and support!

Here's a video a little later in the evening of her dancing around:

We love you, Clementine! <3

25 weeks & 5 days | 100 days to go!

Celebrating Mother's Day, 24 Weeks


I am so thankful and so moved to be able to celebrate my first Mother's Day. Thank You Lord for this beautiful gift, and thank you Clementine for being so strong and so wonderful. I am so excited to be your mommy. You are going to be the most amazing person. I cannot wait to meet you!

And thank you to my sweet, sweet, sweet husband. You made my day special, and you make my life beautiful. Thank you for your never-ending support, and your warm heart and dreamy smile. From rainy days in to days spent picnicking in the sunshine, everywhere and anywhere with you is where I want to be. I am so excited that Clementine will get to have you for a Daddy.

I love you so much, Mark & Clementine. So much!!

2014-05MAY-11 SANDS POINT PRESERVE

2014-05MAY-11 SANDS POINT PRESERVE

 

Here are the two most amazing women I've ever known - I love you, Mommy & Grandma!

Mother's Day Gifts from my Mama &lt;3

Mother's Day Gifts from my Mama <3

Mother's Day gifts from Ruthann &lt;3

Mother's Day gifts from Ruthann <3

24 weeks | 112 days to go!

23 Weeks, 1 Day


Hi my Sweetie Pie,

Happy Cinco de Mayo!

I just wanted to say how much I love you. You are so precious to me! I love when you move, and I know that you're just doing your thing - keeping busy, being strong.

Your daddy and I both know you're stronger and more determined than the two of us combined — in your short time with us so far, you've held on while mountains were being moved and we're so proud of you. You're truly special and a beautiful gift to us. 

I haven't even met you yet, however I do know you've already changed the landscape of my heart. I have never known greater fear than the prospect of losing you or greater peace than in the comfort that God loves you so much and has given you so much strength. In all of the helpless moments I've felt, there was nothing I could do but love you and love you and love you even more and pray. I love you so much I could burst. I hope you always know that, baby girl.

Your daddy is the sweetest man alive, that I have ever known. He has the biggest heart and it's bursting for you too. He is inspired by you (how could we not be moved by your amazing little life). He's always going to be here for you, to have your back, to make sure that you have every opportunity to grow and have a happy, beautiful life. The challenges you've faced so far have been tremendous, and we only hope that the challenges that have yet to come, you'll always take them with the same strength and with humor and grace, that you can see them all through too. We believe in you so very much.

It's been an exciting couple of weeks - it's finally Spring and the trees and flowers are all blooming. I can't wait until you're here and you can feel the sunshine and the fresh breeze. Yesterday, we watched your sisters sing at Carnegie Hall and had a wonderful dinner all together with your Nana and Papa in the city. I also bought my first maternity dress - I'm down to one pair of pants - we're excited at how fast you've started growing. Daddy loves feeling your kicks. Sometimes you seem to get shy though, it's like you just know we're out here doting on you.

Your Grandbutty got you some nice souvenir onesies/dresses from Myrtle Beach. She's very excited - I'm sure she's stocking up on all kinds of things.

Everyone here can't wait to meet you. My friend Mike is going to teach you how to play softball, he also won't let me drive him around until you're born :)

I just wanted to also say how thankful I am for the support and love that's been showered on you by the Hydrops support groups. It's a miracle that yours has cleared up and hopefully will not cause you any more troubles - and all the glory goes to God for that. I just hope your story gives other mothers and fathers hope when it seems like the impossible, through the heartache and the helplessness that it can happen, that our babies can fight and win at least that battle, against those overwhelming odds - and I hope God comforts and holds their babies close - as close as He's held you.

I love you Clementine, I'm so thankful for you!

23 weeks & 1 day | 118 days to go!

Clementine, Our Miracle Baby


A joyful heart is good medicine..
— Proverbs 17:22

Friday, April 4th, 2014

Mark and I went to get our 18 week Anatomical Sonogram. Up until this point, our baby was perfectly healthy - and aside from my morning sickness, there was nothing out of the ordinary about my pregnancy. We were so excited to find out if Baby Cahill would be a girl or a boy - couldn't wait to finally announce it. We sat in the waiting room, which was busy as always, just ready to find out.

Finally, we get called back, the warm sono-gel squirted on my tummy. The sonographer went really quiet, and then left the room saying the doctor would come in shortly. It was a little alarming to say the least, but never in our wildest nightmares could we have foreseen the next few weeks of our lives.

18 weeks, 5 days, our little cutie ♥

18 weeks, 5 days, our little cutie ♥

In came our perinatologist - highly educated with her Harvard Medical degree and countless years as the Chief of the Department of Maternal/Fetal Medicine at the hospital. If you want the top level opinion here, this is who you want to hear from. The words, "I'm very sorry, your baby is very sick," sucked all the air out of the room, out of my entire universe. I think I stopped breathing. I forgot who I was. She continued: your baby has Hydrops Fetalis. Most of my previous tests ruled out all the viral / Rh causes of hydrops (also at this point our 11 week sono and quad screening had ruled out any major chromosomal issues), so she concluded that it's most likely non-immune/chromosomal and said our baby had a 10% chance of surviving through the weekend.. or very much longer. She explained that our baby's hydrops was advanced and that there was pleural effusion (fluid around the lungs) and ascites (fluid in the abdomen) — and there's no treatment for this. Then she printed us a picture of our baby and exited.

Tears started streaming. What. Just. Happened. I don't know if I said two words together for the next few hours. I don't know where I would've been if Mark hadn't been by my side. We were so blindsided, we didn't even find out if our baby was a boy or girl. We just drove home beside ourselves. All the while, the aching question - was I just sent home to let my baby die inside of me? - ripped through my entire being. I honestly cannot image a situation more emotionally or mentally distressing. When weighed with the option to terminate, there is no choice - but still, the fear that we would find out that she was gone.. that I was just waiting for the worst? There are no words.

Hydrops Fetalis is a condition in which fluid accumulates - there are many, many, many causes - but the alarming, gut-wrenching part of it is that there's almost nothing you can do. It's usually a result of an underlying issue — and when diagnosed early (before 20 weeks) and coupled with chromosomal issues, the outlook is entirely, heartbreakingly grim.

We spent the weekend attempting to be normal.. me mostly falling into hysterics and crying myself sick. Mark just holding me, doing his best to hold us together. I have the most loving, amazing husband in the whole world. The range of emotions I went through, that he just weathered - I am so thankful for him.

Monday, April 7th, 2014

We followed up with our obstetrician. He's a great guy - supportive in everything, wants to be thorough as possible, fielded all of our questions with the patience of a saint, told us he was with us every step of the way - he ordered more blood work and scheduled the amniocentesis for the next morning. The only thing I remember was the absolute relief I felt hearing our baby's heartbeat - the most beautiful sound I have ever heard:

Tuesday, April 8th, 2014

We returned to the Maternal/Fetal Health Department for our amniocentesis the next day. During our preliminary sono, we found out our darling is a girl - we named her Clementine Grace. Clementine for God's loving mercy that He showers on her and Grace for the gift He's given us.

It was this sono that we initially found out Clementine has an atrioventrical septal defect, a heart defect - at this point, it seemed like her heart might be causing the hydrops.

The amniocentesis is not exactly a pleasant experience. However, I am thankful that said perinatologist performed it. I got to come home on bedrest - which is not as fun as it sounds, either.

It was today that beyond the shadow of a doubt, I realized I was feeling her move. Her little popcorn thump thump thumps. Mostly faint, and every now and again bam! Hello! My sweet little Spartan.

Thursday, April 10, 2014

We got a call from the genetic counselor, of the preliminary testing (100 cells) on the amniotic fluid, 100% came back as Trisomy 21 - Clementine has Down Syndrome. My world shattered again - not for the Down Syndrome, but for the confirmation that she has chromosomal issues, confirmation that her hydrops is most likely fatal and I really do not know what to do with that. I made the mistake of Googling message boards about it while sitting in the Buy Buy Baby parking lot returning some boy shoes I had bought just in case, and I fell to pieces. Mothers who gave birth to their "sleeping babies" at 37 weeks, 21 weeks - those who gave birth to babies who lived for 3 weeks, for 2 hours. The words "I thought we could do it, I thought we could beat the odds." Tears. Endless streams of tears. I just sat there in my car, crying, watching expectant mothers and mothers with babies walking around - I couldn't drive, I couldn't stay. (my heart goes out to all the mothers and fathers who've walked this road, who've known this pain.)

Tuesday, April 15, 2014

We had another Maternal/Fetal appointment, this time with a different perinatologist. This appointment felt more doom and gloom than the first, if that were possible. We felt more pressure to considering termination - that would never happen, I could never take my baby's beautiful heartbeat away from her. NEVER. So she arranged for us to work with a patient coordinator to meet with a pediatric cardiologist and a neonatologist / take a tour of the NICU. Mark was completely distraught at the thought of Clementine being in a NICU, but felt that it was necessary to prepare ourselves.

Wednesday, April 16, 2014

I'm not sure if I've mentioned how uncooperative our girl is. She definitely takes after her mommy. And a little bit of the stubbornness of her daddy. All of her sonograms, she just could not be bothered to let the sonographers see what they needed to - I love her so much.

Well today was the day to get a fetal echocardiogram and meet with the pediatric cardiologist. We sat there watching Property Brothers on HGTV (probably the only thing keeping me from jumping out of my skin). The sonographer was really nice, and at one point broke down when the guy the twins were working with said "I didn't think the roaches were so bad." It was so nice to hear laughter. Mark asked if she could see the heart, since all previous attempts left room for only vague diagnosis. She said that Clementine had finally rolled over and she was getting great views. Clementine was thumping around my belly for sure.

We met with the pediatric cardiologist and she told us that Clementine has an Atrioventrical Canal - and that 50% of babies with Down Syndrome get this. She said that the heart, despite the defect, had great pressure - and wasn't too leaky. She ruled out the heart as the cause of the hydrops. She said that there's some underlying chromosomal or lymphatic issue causing it. The world went flat again. She generously gave Clementine 8 weeks to live. Mentioned things like "fetal distress" and "if it was only the heart and no other issues, we'd be having a much different conversation." Apparently, Clementine's brain has been over-compensating for the "fetal distress" and has been diverting more blood to it, so that's good and bad. Good that her brain is at least taking care of itself, bad that it's causing deprivation elsewhere.

There's that nagging fact that most babies with chromosomal issues, who would ultimately develop hydrops actually spontaneously abort by 8-12 weeks, and you would never know that all of this was going on.. and here's our little girl, holding on, fighting for her life. Every. Single. Day. Every single day is a miracle - a miracle that she's made it that much further, that she's stayed with us that much longer. I love her so much. My heart just bursts with love and joy and thankfulness for her.

Days, weeks blur together at this point. So many other appointments. So many other questions, comments, concerns. The exhaustion.

We inevitably thought of "fetal distress" and her little body:

  1. Do we let Clementine be? Let her stay with us as long as she wants and cherish every minute?

  2. What if she makes it to birth and is too weak for surgery - her issues are too great? What if she's in so much pain, what if all she knows of life is suffering and then she passes on?

  3. Not that it's an option, but if we "take matters into our own hands" would we spare her a horrible future full of painful medical issues?

Through all of this, we clung to our constant prayer — God please be merciful to our baby girl. Please do whatever is in her best interests and if that goes against the hope of our hearts, please give us the strength to understand.

Be still before the Lord and wait patiently for Him.
— Psalm 37:7

Wednesday, April 23, 2014

One full week later, we went back to Maternal/Fetal medicine. After our sonographer finished up, the second perinatologist we met came in, cheerful as could be. She may not have been the same person - your baby's hydrops is almost completely gone!!! What?!!!! She told us she would take us as far as she could go. I asked if that was up to Clementine, and she said that it was. She went out and sent in the first perinatologist, who also came in giddy as could be for us - she did a little check herself, and declared the hydrops had gone into spontaneous remission! Miracle of all miracles. Considering how rare hydrops is - spontaneous remission is like getting struck by lightning a million times over. Thank You Jesus. Tears of joy!

We asked about her lungs, will they be able to heal/develop - she said since it was so early in gestation, her lungs should be fine moving forward. Will the hydrops come back? I wouldn't think so, she said.

We were filled with laughter and we sang for joy.
— Psalm 126:2

We were just as punch-drunk and walking in a dream as before, but this time, all in the glory of God's miracle, His faithful love for our little one. In the span of a week.. in the blink of an eye, God changed my baby's life like He changes night to day.

There's still a tremendously long road ahead. There's still the pediatric cardiothoracic surgeon to meet with. The prospect of time in NICU. Any other challenges along the way. All we can do is continue to take this journey day by day. But for today JOY. THANKFULNESS. MIRACLES. LOVE.

Now faith is the assurance of things hoped for, the conviction of things not seen.
— Hebrews 11:1

Thank you for all your support, love, and prayers!! ♥

((an extra big thank you to our coworkers for all of their kindness during this time))
(((also our doctors and their staffs have been nothing but professional, caring, helpful, and knowledgeable. there's no way they could've made any of this less [insert adjectives here] for us, we are very thankful for their efforts and look forward to continuing this journey with them)))

I will give thanks to You, Lord, with all my heart;
I will tell of all Your wonderful deeds.
I will be glad and rejoice in You;
I will sing the praises of Your name, O Most High.
— Psalm 9:1-2

21 weeks & 3 days | 130 days to go!