I started to write this for World Breastfeeding Week, however, I didn’t get a chance to finish it (surprise!) so here it is on Clem’s 5th birthday and the 5th anniversary of our first time breastfeeding.
Let me preface by saying I believe fed is best - that if you wanted to breastfeed and could not, you are not a failure; if you didn’t want to breastfeed and did not, that’s great too.
This week falls a little shy of FIVE years of nonstop breastfeeding (and at times exclusively pumping).
I’ve breastfed despite being told Clementine - having Down syndrome - would never latch due to low muscle tone and tiring easily.
I’ve battled oversupply, and breastfed through 8-10 cases of painful mastitis, as well as staph skin infections and one bleb on my nips.
I’ve managed to power through times when I’ve accidentally eaten things that have tanked my supply.
I’ve breastfed through all nine months of a miserable pregnancy: two trimesters of hyperemesis gravidarum, followed by my last trimester being diagnosed with gestational diabetes mellitus.
I started tandem breastfeeding when Zelda was a little over 12 hours old.
I’ve pumped and fortified with formula to boost Clem’s caloric intake while she was in heart failure.
I pumped for Clem through heart surgery and kept pumping when she had mild chylothorax and had to be on a low-fat, high protein formula. When we got the all-clear from her cardiologist that we could resume (and then had a follow up x-ray just to be sure it was completely healed) we started exclusively breastfeeding and never looked back (except the rare but necessary pump & dump occasions).
I’ve pumped and dumped when I had to take medications incompatible with breastfeeding - or that I didn’t want my children to be exposed to.
I survived months of one terrible insurance issued pump that tore me up.
I’ve breastfed through teething and they now both have teeth and sometimes they forget that fact.
I’ve breastfed through a handful of bouts of stomach flu, strep throat, sinus infections, courses of antibiotics, thrush. Through chronic migraines, panic attacks, anxiety, and depression. Through heatwaves and dehydration.
I breastfed Clem immediately after her tonsils and adenoid surgery when she refused to eat or drink anything.
I’ve breastfed on long road trips, on planes, trains, subways, and boats. Through sleepless nights and busy days. In the ER and during doctor appts. On beaches, in parking lots, restaurants, stores, and parks. While walking, standing, in the shower (stomach flu looking at you), multitasking, and working.
I’ve breastfed at concerts, in museums, at the happiest place on Earth, and at Hogwarts.
I’ve managed to continue breastfeeding despite moments of being so sleep deprived, delirious, and desperate that I wanted to take enough pseudoephedrine to dry up and run away somewhere I could be alone and sleep uninterrupted for months.
I’ve breastfed through hurtful comments - people discouraging me endlessly, criticizing me for extended breastfeeding. Telling me to only breastfeed Zelda. Questioning if I really believe Clem will ever wean (and to answer - yes I do, when she’s ready, or my body is done).
I’ve had women congratulate me on going so long especially knowing how much work it is. Their supportiveness means so much more to me than they could ever imagine - and not for ego or attention but because it has been a long, hard, exhausting road - because when you’ve had negativity dumped on you, the physical toll it’s taken and wanting to quit in those moments of exhaustion and pain - it’s nice to be reminded that there are people who recognize that breastfeeding is beneficial, that it is great to keep going for as long as it’s mutually wanted. That two years and beyond is not messed up or going to mess my kids up. It’s just really a soothing balm to the soul of a tired mother who is trying her best every single day - who does everything she possible can for her babies (no matter how big they are) - and who lives this out despite society’s largely unaccepting nature to public and extended breastfeeding.
I have to give propers to my husband for supporting me through all this. Sometimes he tells me I should try to wind it down when I’m overwhelmed and dangling by a thread because he doesn’t want to see me suffer. Those moments notwithstanding, he’s 100% in it with me and helps me as much as he can to keep things going, to feed me when I’m starving and can’t take a break, to take care of things so that I can keep feeding these two maniacs on demand and for as long as they want and need. He tells me not to listen to the naysayers and to do whatever I believe is best for the three of us - and that he’s proud of me for being a good mommy to our girls.
I am also so indebted and grateful for my Dr. of Breastfeeding Medicine who has been by my side and had my back for the past 5 years. I couldn’t have done any of this without her support and expertise. I’m so thankful for her as the lovely, wonderful, intelligent woman that she is and her dedication to both mothers and their babies, as mothers are often overlooked and unimportant once a baby is born. She has been such an advocate for the 4th trimester and she holds a special place in my heart!
It’s been truly beautiful bonding with my babies in the quiet moments of pure snuggly bliss. It’s been a relief to be able to calm and comfort them when they’re in pain or screaming and how all the suffering and strife just fades away when they melt into you. It’s been a blessing to be able to watch them both bonding with each other from day one holding hands and falling asleep together on my chest, and at times pestering each other now too. It’s been a miracle to be able to breastfeed them through illnesses that they otherwise refused to eat or drink, and to have kept them pretty healthy through all these previous sick seasons all things considered.
It’s been a labor of love and while I definitely haven’t loved every minute of it I would do it for them again a trillion times. I am so thankful to have been able to do this for my babies for so long and hope that I can continue for as long as they need and want.
Published at some point in 2016, lost the original timestamp when I re-set it to public. Sorry some of the IG pix are missing. Not sure which ones they are now!
Clementine is a miracle and very determined at breaking rules and expectations. Knowing at birth that she has #Downsyndrome, we were told not to expect her to latch and #breastfeed. Since she has DS the best thing for her *is* to breastfeed - all of the wonderful developmental/nutritional/immunological benefits that apply to "typical" children, they all become exponentially more important for a baby with DS. I remember her doing the newborn baby #breastcrawl and being like blown away - here is my baby who almost didn't make it past 18 weeks in my tummy and has a heart defect crawling her way up. I wish I had video but the memory is so clear. She's amazing!
Shortly after we got home she went into #heartfailure sooner than was anticipated so I had to switch to #eping (exclusively pumping) and fortifying with formula for extra calories. Unfortunately, the pumping put me in overdrive and I was pumping 50 oz a day, had to pump every hour around the clock or I would get so painfully engorged. I accidentally fell asleep for 7 hours (had plenty of milk stored up and help on hand to bottle feed her) and woke up with my first bout of mastitis. At a month and a half in - she started throwing up her meds so we took her to the hospital to get her back on track - second wave of mastitis.
Clem was so sleepy that bottle feeding her was an arduous labor of love - she would take almost an hour to finish .5 oz of milk+formula - healthy babies on avg take 15 mins to down 2 full oz. She was failing to thrive and so they bumped up her #openheartsurgery by a month.
I had to continue pumping through her recovery - so my husband sat bedside while I was next door at Ronald McDonald House pumping and crying alone all day and night with quick pop-ins over to her PICU room. Shortly after surgery milky fatty liquid was coming out of her chest tube and she was diagnosed with #chylothorax - a normal complication where a lymphatic vessel accidentally gets nicked and starts leaking into the chest cavity. So we had to stop giving her breastmilk and she went on a high protein low fat special formula. I was told for 6-8 weeks. I went momentarily bananas - I would have to pump for another 6-8 weeks. At this point, I'd had mastitis 2x, my nipples has ripped at the base and bled a few times over, I hadn't slept more than 2 hours at a time for 2 months, a few weeks after delivery I was on super strong antibiotics and had to pump and dump, and I had a freezer full of milk already.
We got her home and she started getting belligerently fussy, screaming, thrashing, constipated, and then came the explosive diapers - it was awful. That special formula was hurting her. I researched centrifuging my breastmilk to separate out the fat - I begged her cardiologist for another option. She said that since the chylothorax was so mild that it might be healed and to try breastfeeding her for 2 weeks and then get a chest X-ray. Thank God! The X-ray was clear and my milk was starting to sync with Clem and we never looked back. Of course, I have lost my milk like when she first started cutting teeth and they were so razor sharp they made me bleed when she bit and I was so nervous I couldn't let down. And most recently last week during the heatwave - while she was recovering from a kidney infection - I barely had any milk at all. And all she wants to do is nurse.
Recently, I have had doctors tell me I need to stop since she's almost 2. Per the World Health Organization I plan on BF until 2 y/o and as long after that as she wants. Up until her kidney infection she did not have so much as a cold since birth - I believe strongly in the immunities that breastmilk provides and for our children with DS / Congenital Heart Disease (weakened immune systems) who spend a lot of time in the hospital for respiratory illnesses that simply give others sniffles - any I am determined to breastfeed for as long as I can, I know it won't prevent sickness forever and she'll wean sometime - but so far I am so thankful I've been able to do this for her.
5/16/19 // 4yr 8mo // 16mo
this is a picture i will cherish forever❤️ this is the first time we’ve gotten to see all 3 doctors at the same time (2 of whom we haven’t seen since Clem was born/had surgery), and it was an unbelievably special and precious moment for me to see them all with Clem 5 years later (starting with her 18 week u/s) and be able to thank them and tell them how important they’ve been in our lives 💕
Far-left: Chief of Maternal Fetal Medicine, this is the high-risk neonatologist who gave me the news at Clem’s 18 week anatomical ultrasound that she had 10% chance of surviving the weekend, performed the amniocentesis, and monitored my pregnancy along with her team - she’s such an intelligent, compassionate, poised woman who i admire and respect so much and am thankful to have had her by my side, holding my hand, celebrating, having my back and being there the whole way.
Left: Clem’s pediatric cardiologist who performed her first fetal echocardiogram, gave us such hope and optimism and has been a wonderful friend and advocate to Clem. We adore her and are so thankful for all she has done for us and look forward to watching their relationship grow in the years to come.
Far-right: Chief of Pediatric Cardio-Thoracic Surgery - her performed Clem’s heart surgery at 2 months old. We are so forever thankful for his skilled hand giving Clem a new beginning - the start of her real babyhood experience, quality of life and a bright future.
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! ♥
attempting to organize 34+ years of photos.. wish me luck! 😬😅😂
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.
FULL AUDIO VERSION:
6/20/16 // 21mo
preview of the new "Oh My Darling, Clementine" by @valemmich When I actually listened to the words of the original, it was so sad I cried my eyes out. My best friend had bought another acoustic song for me for Christmas from Val's Song Workshop so I put together a rough draft of this version and asked him to work his awesomeness on it — and as always he delivered. Now I cry tears of joy and my heart bursts with just how truly perfect this is. Thank you, Val! ❤️ #valemmich #clementinegracie
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!
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!
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!
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.
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.
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!
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!
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!
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!
28 weeks & 3 days | 81 days to go!
27 weeks & 6 days | 85 days to go!
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!)
27 weeks & 2 days | 89 days to go!
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!
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.
26 weeks | 98 days to go!
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:
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!