Sunday, February 23, 2014

3rd Trimester Finally Here...Let's Recap...

9/4/13  Anxious to know if we're expecting. Found a partner in crime to look at the early test with me and she confirmed what I thought I saw, but the next test would negate. Wait a few more days.

9/6/13 Day after our sweet daughter's birthday. Take another test and see two pink lines. Go take actual test at doc's and stand there SHOCKED to hear the words, "Congrats! It was postive! You can go schedule appointments now." Not sure how or why to explain it, but it felt surreal to hear those words again.

10/7/13 Opt for elective sonogram to know everything looks OK and hear heartbeat before we travel 8 hours home for two weeks. Saw the peanut on the screen and heard heartbeat. 8 weeks, 2 days, but measuring 7w4d. Not enough to change dates though. Since we saw and heard a strong hearbeat, made it facebook official!

10/14/13 10week appt with OB nurse went smooth. All bloodwork/first trimester labs look great!

Fall...nausea, as per usual for me and pregnancies. Getting through life with constant morning sickness. Having the hubs teach most of my piano lessons because I'm exhausted and nauseous. Sucking on ginger candies to get through photosessions.

12/22/13 Couldn't sleep. Dreamed all night wondering if it was a boy or girl. Excited to go buy a pink or blue stocking the next day after the ultrasound.

12/23/13 7:00am Two days before Christmas. Woke with uneasy feeling. Something seemed off. Unexpected snow storm overnight made sitters late, made my anxiety worsen, put a shadow on the morning. Made it to appointment 10 minutes late due to snowy unscraped roads.

12/23/13 8:45am Minutes into sonogram, joking with sonotech about wrapping Christmas presents at least minute and creative hiding spots when you buy presents early. Informed it looks to be a girl, but needs a better view, we'll come back to that. I ask, "Everything else look good?" to hear response, "Actually I'm seeing a lot of things that concern me." Read that story here.

12/23/13 9:20am Listen to doctor go over ultrasound strip images, which we didn't get to see, but instead sat on the counter just out of view, and told that our daughter? Son? Couldn't really tell...had many layers of concerns: Fluid on the brain-on, as in IN the brain. Fluid IN the lungs.Hard to see both kidneys. Cleft palate. Fluid on neck measuring more than normal. Couldn't see an entire chamber of the heart. Told our child would most likely not make it to birth, and if so, wouldn't survive long, unless it was due to Down Syndrome. But most likely that it wouldn't survive much longer in the womb and that most likely we'd come in for routine appointment and there would be no heartbeat. Pretty much told to go home and wait till the following Monday (week later) when we could do amnio to get more results and would proceed from there. Two days before Christmas, and told to go home and wait for our baby to not make it.

12/30/13 Day before New Year's Eve. Everyone was posting on facebook how horrible 2013 was and how much they were looking forward to a new fresh 2014. We were back at the doctor's for the amnio test, which was not pleasant, and then after told to just wait the 2-3 weeks for results. We needed more answers than that. We needed at least an appointment to hear heartbeat for peace of mind in the meantime. We prayed and decided to switch doctors. We needed to fight harder than that for our child.

1/6/14 Meet with new doctor. Already start to get questions answered. Still don't know what's going on exactly, but thankful that he went over the ultrasound measurement by measurement and explained everything to us. Game plan: wait on amnio results, but in meantime, book Level 2 ultrasound with Topeka and see perinatalogist there. Hope results are in before we head to Topeka.

1/10/14 Wait in nervous and anxious state all day for possible results. Learn what it's like to wait on important medical results. Breakdown and call nurse at 2pm and told results aren't culturing out as they should due to blood in the sample. Nurse called back at 4pm to tell us FISH results would be in hopefully by Monday and at least let us know if it's Down Syndrome, Trisomy 18, or Trisomy 13.

1/13/14 Results back by appointment time. Everything is negative for those trisomies. Relief. Smiles through tears. Joy...ish. Cautioned that it could be maternal cells that were tested (meaning my cells) but most likely not the case. Breathe sigh of relief.

1/15/14 2:30pm Meet with Genetics at Topeka. They can't figure out how the FIST result was negative because symptoms scream trisomy. Thanks for the vote of confidence. Ask if we understand the depth and want to continue with the pregnancy. Stare her directly in the eyes and say YES. We are keeping our daughter, thank you VERY MUCH.

1/15/14 3:00pm Ultrasound. Entire hour of ultrasound, with silent sonotech. Nothing on the screen was explained to us until the doctor came in. Doctor was sweet and very concerned, and again, questioned over and over how the FISH could be negative with all her findings. However, this time there was no evidence of fluid IN brain or lungs, to the point where she looked at us and questioned if that was even the case in the first ultrasound. Praise that the Lord was starting to heal her. Notice possible club foot and cleft palate. Neck fluid nearly doubled what it should be. Heart missing a complete chamber. Twenty minutes of talking and questions and information from the perinatalogist, and her explaining Trisomy 18 or 13 which were most likely possible and told to schedule follow-up repeat amnio with our doctor because again, those results just can't be right, but hey, for future reference, if your baby doesn't make it, then there's a support group in Topeka for that. Gee, thanks, we'll be leaving now.

1/16/14 Repeat amnio with our new doctor. More waiting on results.

1/20/14 Heartbeat check appointment. Results starting to culture, but not in yet. More waiting. Spend week depressed, searching out anything we can on information about trisomies.

1/27/14 Heartbeat check appointment. Results now in, it's Mosaic Trisomy 22. We have a diagnosis, but  does it mean exactly? It explains how the first FISH test was negative, because most likely cells drawn didn't contain any extra chromosomes. Crushed to know it wasn't negative again. Thankful to know our daughter could live a decent life with a mosaic trisomy. Left bewildered, as was our doctor, because there are only 15 reported medical cases of Mosaic Trisomy 22. Spent week trying to get our hands on any ounce of info we could. Dr. put in call to Children's to get seen up there.

2/3/14 Morning: found a facebook group specifically and only for those who have or know someone with MT22. Join. Feel encouraged. Finally finding answers-real answers, ages, birth weights, stories. Afternoon: Heartbeat check appointment. Review questions to ask at Children's. Check heartbeat...can't find it. Slight (a lot of) panic. Quick ultrasound to confirm and BREATHE that there is indeed a strong heartbeat.

2/10/14 Appointments a Children's. Read Part 1, Part 2. Encouraged in the morning by knowing there are surgeries and things that can help her heart, that surgery wouldn't be asap and we can see and hold her first, hopefully. Encouraged that cleft palate looks more like cleft lip, and no more club foot suspicions, but growth chart shows IUGR, or intrauterine growth restriction (aka she's small...really, really small). Then meet with first OB, and was crushed for the next 20 minutes as he talked potential for still birth due to her many 'complications'. Drove home in tears and frustration.

And now...we wait. We continue heartbeat checks every week. Growth check ultrasounds every two weeks. Children's Mercy follow-ups every 4 weeks. Sigh. It's been a roller-coaster.

We hit 3rd trimester today. Part of me is so excited that 2nd trimester is FINALLY done. Over. History. We made it. She made it, despite our first doctor, the perinatalogist, and the geneticist all sure she wouldn't.
God is healing her, a bit each ultrasound. We're encouraged by that. But it's still scary.

With our first two children, I was a super nester. I planned. I prepped. I can remember sitting at the desk at my job at the time while I was pregnant with Isaac and mapping out schedules of how to balance childcare between the two of us without needing extra hands to babysit (and pay for). I had the nursery planned and done before 3rd trimester. I had every gift and stocked item opened and put in its place weeks before delivery. With Abi, I planned for weeks ideas for how to make one bedroom work for both a boy and a girl. I picked colors. I moved furniture in their room. We bought a toddler bed and transitioned our son to big boy bed. We bought pink, even though pink hasn't been around in my husband's family for more than five generations. I went to endless garage sales with Grandma Bff when she visited. I got up at 7am on rainy Saturdays all summer long to accompany Becca, or Lydia, or Emily to garage sales in an attempt to be frugal yet stock the closet pink.

With Chloe, we had a name picked before that first ultrasound, but that was it. We didn't buy anything before that ultrasound. Nor after. On the days/appointments that gave us hope, we bought a taggie. On the days/appointments that brought frustration and tears, I put the taggie out of sight. After Children's appointments, we decided to love wrecklessly and cleaned up the changing table, hung some stuff on her wall, bought a blankie, started considering NICU approved clothes and preemie clothes for her dresser.

Hung out with a friend yesterday who is due just over a week before us. Talked about how to make her nursery work for a boy and a girl. Talked through organizing a closet for both blue and pink clothes. Brought back home the baby bathtub, Abi's baby clothes, and a few other trinkets I'd loaned her when her first was born. Realized that I have nothing else prepared for Chloe, and we're 12 weeks out from delivery. Eleven weeks out if she makes it to week 39 which is most likely when C-Section would be. Nine or ten weeks out if you consider the long thread of MT22 mama's telling me they all went into labor around week 36. Getting nervous for what the spring has in store. Getting anxious that I should be digging through the totes of baby stuff, finding pump, finding burp clothes and getting them washed up, looking through Abi's newborn clothes to see if any will work and washing them up. Can't buy bottles yet...don't know how she'll feed with cleft lip. Can't stock up on possible formula if nursing is a disaster again. Can't stock up on diapers because we don't even know what size she'll need, or if she'll have surgery or a feeding tube and if so, will that brand of diapers rub on her belly? I know there's time for all of this (or is there if she comes early?), but I'm such a nester and I want to nest. I long to nest. It's in me as her mother to want to prepare a home for her. But I'm hesitant. I don't even know how to prepare for her. How long will we want her in our room for closer monitoring? A few months? 6 months? And then back in our room again for more monitoring after her 2nd surgery at 6 months? {Note: find baby monitors in storage}. Till she's 18 years old? I wish. I might. Sigh...

Welcome, 3rd trimester. Lord, be with us now.

Tuesday, February 18, 2014

We Wait...

The waiting is the hardest. We're not exactly ready or prepared (physically, mentally, emotionally) for what all will go on at her birth, so you would think we're ok with knowing we have nearly 12 or 13 weeks left in preparation for her. And yet, each week, waiting is the hardest. Sometimes it's all I can do to distract myself and get through the week until the next heartbeat check appointment. I live for Mondays. I live for hearing that heartbeat, for making sure we're growing right on schedule, her and I both. For the reassuring answers from our doctor to even our hardest questions that week.

And yet, oddly enough, we've hit a spot where other than ultrasounds every two weeks to measure growth, the heartbeat checks are all we can do. We scheduled my 28 week labs for a couple weeks from now. We plan ahead with our doctor that we'll do all the routine stuff, even for the most un-routine pregnancy. But otherwise, it's week to week and waiting.

Please don't misunderstand...yes, we're so thankful for yesterday's appointment going good and hearing a strong heartbeat as my facebook status said. But it was also hard for us. We had so many questions after KC, and sadly, not all of the reports from those doctors were in yet for us to discuss with our doctor. That was a bit frustrating. We're working on this puzzle, and each doctor in KC has a piece or two, and we're waiting for them to put that puzzle together and send us the final product so we can look at the whole and not the pieces. Dr. P did an amazing job answering all of our crazy questions and concerns, but again, there was still hard questions for us to ask and him to try to answer. It was a good appointment, we heard her heartbeat, we were encouraged and reassured that our doctor didn't believe I'm not necessarily at any certain higher risk of preterm labor or stillbirth based on her condition(s). But words like preterm labor, signs of it, what to do, what will game plan be, what happens if Chloe drops below the 10% percentile on any of these scans...hard questions were still asked.

We have a diagnosis:
*She has a rare chromosomal abnormality:  Mosaic Trisomy 22.
*She is small. IUGR is the technical term. Inter-Uterine Growth Restriction.
*She has Tricuspid Atresia.

Many look at it and say ok, we have a diagnosis, we have a plan to deliver at Children's, she'll get help. Things are good, things are looking better, things are improving. Great! Yay-then can do surgery for her heart!! So glad to know there's no more club foot! And so on. Please know, we are so thankful to the Great Physician for these things as well...

However, please know, there's still this cloud hanging over us. I'm suddenly picturing the Peanuts character that has that constant rain cloud over him. It's somewhat how we feel. We function, but it's not always up to par. Some days we go through the motions. Other days are good, depending on what our definition of good is. Yesterday Alan got us out of the house, took me and the kids to lunch, ran errands before dropping off the kids at the sitter for the appointment. It was a good family day. But it still involved an appointment where there were some tears shed (lighthearted laughter too, thankfully) and prayers said. The kids fell asleep at 6pm on the way home, and were easily transferred directly to bed, so we had a sort of in-home date night to end our day, watching Olympics together, playing Wheel of Fortune on the computer together, having a late dinner together. It was a good day. Probably the best day we've had as a family in a while. But there was still that cloud over us...even our best days can be challenging.

So we have her diagnosis, but we don't have her growth each week.

We don't have a set-in-stone birth plan, and won't till we're closer to...well, hopefully full-term. We can't have one because that's the Lord's timing.

We still don't know if she'll decide to come early. We're still anxious about preterm labor. I'm still very anxious what to watch for, or what is a normal contraction vs. labor contraction since I didn't have them with the other kids. Sometimes the slightest Braxton Hicks can bring worry to me.

We're still trying to explain this to the kids. We're still trying to hold back tears when our son asks us how much longer before Chloe comes and can she come tomorrow? Yesterday he said, "Today is Chloe's birthday!!!," to which I hollered back, "Better not be!!!!"

There's still the looming thought of how we'll make it through all of this financially.

We won't know till they can monitor her at birth if she'll need that first surgery or not.

We don't know how she'll feed, and have been told the possibility for a feeding tube, especially with the cleft lip, and feeding/gaining weight before surgery is vital.

We don't yet have the education to know how to medically care for our own sweet daughter once she does make it home with us.

There are still so, so many questions at the back, and front, of our minds constantly. So when people ask how we're doing, and we say one day at a time, this is why we answer that way. Each new day brings a new set of questions and thoughts, and prayers. And if we say we're ok/fine/not so too bad today, then please just smile and give us a hug, and let us just smile back.

And in the meantime, we try to have hope. We try to trust each bit of this journey, but I can't lie, I have my moments.

Earlier into this journey, a dear friend who I know we have the friendship where we can ask each other pretty much anything, said, "I honestly don't know what to say. Can I ask, what would be helpful to hear? What are things I shouldn't say to someone going through something?" I loved her honesty, I think more than anything anyone has said to us thus far on this journey. Today Alan happened to listen to this, and it hit home with us, and not just in light of our situation, but for our hearts to know how to respond to others going through trials as well (good learning for us as well). Please take the time to watch, listen, and consider it. And please know how grateful we are to each of you following the blog and praying us through this.

And on a lighter note: Alan is trying to convince me to let him grow a mustache like that. I vote no.

What Not to Say to Someone Who's Suffering from The Gospel Coalition on Vimeo.
Sunday, February 16, 2014

Something Worth Watching

A friend posted this on facebook, and in the spirit of the Olympics, I decided to watch it. I still remember being in 3rd grade and watching him skate at the Olympics, and then a few months later my parents surprising me with tickets to Stars On Ice, so I've actually even seen him skate.

Anyway, something worth watching. Something worth thinking about. God can write any story He wants in our lives {something I am definitely learning on this journey with Chloe!}.

Saturday, February 15, 2014

Part 3: "Let me wrecklessly love you..."

The words to the song that steal my breath away as I think of Chloe each time I hear it say,
"Let me wrecklessly love you,
Even if I bleed,
You're gonna have all of me,
You're gonna have all of me..."
{Matt Hammitt}

That was the theme going through my head the day after the appointments at Children's. Let's just say I was a bit more than overwhelmed and scared after the last appointment and how the doctor went on an on about risks and complications.

So I had a choice on Tuesday, while Alan was back at work and it was just me and the kids. Sit and stew and worry and cry. Or cry, but not wallow. Decided to wrecklessly love her, as her song says, and nest a little. We've been on SUCH a roller coaster the last 8 weeks of whether or not to expect a May baby, whether or not we'll hear a heartbeat next appointment, whether or not she's survive past a certain point that we literally have not planned or done anything baby-wise, other than buy that one taggy, so now was the time. Cleaned up the changing table. Pulled out the dresser we'll use for her. Changed the bedding on the crib {though I was smart enough not to climb in the attic storage and get the other side/rail to the crib and take the toddler side off myself. That's an Alan job}. Put her blanket and taggy we got her on her crib. Texted a friend about borrowing her changing pad and covers, the ones she cleaned up and head ready before Christmas, but then knew to wait and hold on to a bit more till I was ready. Then, just as I was about to start doing this, Isaac brought me a picture he drew. It was perfect, and perfect timing. So, here's our little attempt at at least starting to nest. Focused on the fact that the fetal cardiologist said bring her home between 2-6 weeks, so that's where we're going to wrecklessly love her and plan on that for now...anything less would not be loving her the way I should while I carry her within me.

Tore down the Christmas mantel and put this up as our wall of hope for her 
{this was done during the week of wait for FISH results test #1 that first week of January}.

Her aunt Jill and the kids made Valentines while we were gone in KC. 
So sweet to come home to. 

First attempt at using our custom desk for crafts instead of editing. Starting to work on framing Isaac's picture he made Chloe.

A little girl remember how to jump on her old bed.

Just needs the other side and rail. 

Her blanket we finally found for her, ironically the day that we headed to KC for appointments.
Perhaps a certain elder's wife might like to embroider her name on it?

The prayer blanket a sweet friend made her, praying over her as she made it. 

While I nested, Isaac hung his art work he'd been making with my scotch tape...and then some...

Yes. The designer in me was committed to moving the crib, but knew better than to do it without measuring it first. And sadly, it wouldn't fit the way I wanted it. Abi helped measure. 

Random cute moment. The kids played by me the entire morning, constantly by my side, wanting to help or just be there. 

Scolded Isaac for using all my tape, then he said, 
"But Mama!!! I made my name out of tape! See, it says I-S-A-A-C!!!"
Ok, actually, that's really creative, kid. It can stay.

Chloe's gonna be naked...gotta get some clothes for that little peanut.

Abi wanted to test the baby's bed...with her baby.

And now Abi thinks it's her baby doll bed. Works for now, but not for long.

We found her taggy with about a month ago while I was at Target with the kids. We get each child one, so we really wanted to get something to make us think of Chloe. The following week, we found out rough news on this journey, and the new taggy almost got thrown away. It sat near the floor of the kitchen for the next couple of weeks...out of sight, but I knew it was there. The kids would ask about it, but I didn't know whether to throw it away because of the pain of considering her not having it, or keep it and keep hoping. It stayed. The kids and I chose it because of the blooming heart on the side <3. At the time Target didn't have that particular blanket yet, but love the blooms and buds on it since it reminds us of her name's meaning.

Needs a baby and a dirty diaper. 

Isaac's one of a kind print for above her changing table...Let me explain:

{In his words} "That's Mommy, and baby Chloe, and that's my taggy and blankie, and that's Chloe's heart, and that's my name!" What are the things with the x's? "Oh, I tried to draw a heart but messed up, so I crossed them out and made a new one."
Already had the fabric scraps for the back, and the frame has been sitting in the closet. Score for free DIY wall art ;).

If only Abi was napping by then as well.

Just need to figure out what to do above the crib on the huge empty wall. 
Pinners unite! Send me some ideas!

Friday, February 14, 2014

Part 2: Chloe's Heart & Treatment

First off, it is 3:33am and I am up with massive heartburn caused by a sweet baby girl pushing on her mama's belly since she's carrying SO high!
Secondly, I am not a scientist, MD, or otherwise, so bear with me on this. 

To begin, Chloe has what is called Tricuspid Atresia {aka missing right ventricle/bottom right chamber of heart}, has a ventricular septal defect {the right and left ventricles have a hole that allow blood to flow through instead of the normal separation between the two}, and an extra superior vena cava.

Here's a quick overview from Mayo Clinic about Tricuspid Atresia and the problem it presents:
Tricuspid atresia occurs during fetal growth when your baby's heart is developing. While some factors, such as heredity or Down syndrome, may increase your baby's risk of congenital heart defects, such as tricuspid atresia, the cause of congenital heart disease is unknown in most cases. (Note: In Chloe's case, this was caused by her abnormal chromosomes/related to Trisomy)

The normal-functioning heart

Your heart is divided into four chambers, two on the right and two on the left. In performing its basic job — pumping blood throughout the body — your heart uses its left and right sides for different tasks. The right side moves blood to the lungs. In your lungs, oxygen enriches the blood, which then circulates to your heart's left side. The left side of the heart pumps blood into a large vessel called the aorta, which circulates the oxygen-rich blood to the rest of your body. Valves control the flow of blood into and out of the chambers of your heart. These valves open to allow blood to move to the next chamber or to one of the arteries, and they close to keep blood from flowing backward.

When things go wrong

In tricuspid atresia, the right side of the heart can't properly pump blood to the lungs because the tricuspid valve, located between the upper right chamber (atrium) and the lower right chamber (ventricle), is missing. Instead, a solid sheet of tissue blocks the flow of blood from the right atrium to the right ventricle. As a result, the right ventricle is usually very small and underdeveloped (hypoplastic).
Blood instead flows from the upper right chamber to the upper left chamber through a hole in the wall between them (septum). This hole is either a heart defect (atrial septal defect) or an enlarged natural opening (foramen ovale) that is supposed to close soon after birth. If a baby with tricuspid atresia doesn't have an atrial septal defect, the baby may need a procedure to create this opening.
Once the blood flows from the right atrium to the left atrium, the heart's left side must pump blood both to the rest of the body and to the lungs. The blood reaches the lungs from the left side of the heart through another natural opening between the right and left sides (ductus arteriosus) that is supposed to close soon after birth. When necessary, this passageway is kept open using medication in babies with tricuspid atresia.
Some babies with tricuspid atresia have another heart defect — a hole between the lower two chambers (ventricular septal defect). In these cases, blood can flow through the hole and into the right ventricle, which pumps it to the lungs.

Below is an illustration from our fetal cardiologist of Chloe's heart (left) and normal heart (right). I put them side-by-side so you can see the differences in the two hearts. Click on the image to view larger.

1) As described by the yellow star description, Chloe will be closely monitored her first couple of weeks in the NICU once she is born to determine if and when she would need the first surgery. If that duct is staying open, then she could potentially come home with us around 2 weeks old. We would have constant contact with nursing staff at Children's to keep them posted on her stats/medications/etc., and especially to keep an eye on if she is turning blue (oxygen not getting to lungs). Otherwise, if the duct is closing as it does in most normal babies, then they would do surgery around 2-3 weeks (unless complications mean sooner) with about a 3 week recovery time (so looking at roughly 5-6 or 7 weeks total in NICU before coming home). 

2) If Chloe doesn't get the shunt, next surgery would be around 6-12mo and reroute her heart. If she has the shunt and it is working, this could possibly be more like 12-18mo old by the time she'd need surgery.

3) Another surgery around 3-4 years old where they will reroute heart, closing off flow to the left side so that no purple blood exists anymore. We have a page that goes with this, but will need to scan it in yet, however it does give detail as to the 3 surgeries.

4) Around the age of 20-30 years, her heart would begin to decline and have trouble pumping, so at this point heart transplant is the treatment. Then again, they have patients who were born with this 30 years ago and are doing well with each new stage of technology. Chloe's fetal cardiologists predicts in the next 20-30 years we'll be growing hearts from stem cells. We pray the Lord grants knowledge in the area of science and this is the case!!!

In the meantime, according to her fetal cardiologist, Chloe should have a fairly normal life, and can even play some sports. She would obviously be monitored often during childhood, and up to yearly I believe after the 3rd surgery. We're also thankful that these surgeries can be done at Children's in KC, as well as her follow-up appointments in between. 

Praises & Prayers:
*Praise that it sounds like if that duct stays open, she might not need the first surgery! Pray this is the case for her. Praise also that it means we can see her after she's born, and as long as there are no complications from birth, she'll have those first couple of weeks to put on more weight and grow stronger before surgery. 
*Wisdom for the doctors come time that she's born as the monitor and discern if and when to have that first surgery. 
*Pray the Lord would go before us and help us with the knowledge we will need to care for Chloe-medications, monitoring, etc. when this time comes.

Additional Links & Resources:

Wednesday, February 12, 2014

Part 1: Children's Mercy Visit #1 {Forgive me, it's a long post, but it's what we went through in one day}

"You hem me in, behind and before..." Psalm 139:5
"...You quiet me with Your love..." Zephaniah 3:17

Those verses kept coming to mind during the night before when I couldn't sleep. Thankful for that reminder that the Lord is my Father and loves me as His child, and will quiet me with His love throughout this day. Reminded me of how often when our other children are sad, scared, frustrated, that we help to quiet them by loving on them. Thankful for that reminder that in the midst of this day, He has promised to do that for us. After navigating the rough waters that are Kansas City at morning rush hour, we arrived at Children's, not really sure what to expect or what the day held before us.

"The sun comes up, it's a new day dawning. It's time to sing Your song again..."

Our first appointment was a combined meeting with a social worker and genetics counselor. The first question they asked was, "So, Trisomy 22? That's really unusual." Yes. We know. We're learning that ourselves. Even the geneticist admitted to having to research it more before our appointment, and tried to give us a printed resource to read, but alas, it was the same one we've already seen and read. Unfortunately genetics took up too much time to meet with social work {about things like Ronald McDonald house when she's born/costs of travel since we're driving from Manhattan/activities for our kids to do during our stay/etc.} so that will have to be another appointment on another trip. Genetics did a good job of explaining the different ways the MT22 could have occurred, be it if Alan is a carrier, or if I am a carrier and happened at conception, however {and although we won't know for sure without a future test}, we do not carry any signs or symptoms of having it, nor does anyone in our family, so genetics is pretty certain that it happened spontaneously on its own at conception. Lightning strike was again the term used to describe the rarity.At this point, there's not a lot genetics can or will do until she is born and then we can begin to see what other traits she has.

"For You created my inmost being; You knit me together in my mother's womb. I praise You for I am fearfully and wonderfuliy made..." Psalm 139:14

Next up was our hour plus fetal echo-cardiogram. This consisted of a sonogram specifically for her heart to watch for blood flow, to see how it's fearfully and wonderfully designed, to gain any knowledge we can this side of birth to know how to help her when she is born. Chloe was a bit less than cooperative. Forty-five minutes in, and she finally gave the tech a few good images, to the point the tech said something to the effect of, "these might just be the best three images we get this whole time." I believe the words the tech used were ornery and stubborn. It would be a theme for ultrasounds that day.

From the fetal echo we were taken to meet Dr. Swanson, the fetal cardiologist, and her nurses Lori and Amy. It's important to note her nurses as they were A) amazing, B) so kind and caring, and C) will be our #1 speed dial resource for questions, concerns, medications, treatments, to call about anything from if Chloe gets a cold to if Chloe is starting to turn blue and so on after Chloe is born. Thankful we get to know them now before she is here.

Dr. Swanson started by explaining and showing us a diagram of a normal heart, and one specifically drawn up of Chloe's heart. Because of the depth of info from this meeting, I'll be posting it in Part 2, specifically of this appointment and all that is going on in her heart and what treatments will be. To sum up for now, the diagnosis is Tricuspid Atresia. Chloe is missing the right atrium (bottom right chamber) that pushes/pumps the oxygenated blood to the lungs and rest of her body. Treatments will include waiting up to 2 weeks after Chloe is born, but monitoring closely in NICU from the moment she is born. There are a couple of ducts in the heart that are there at birth in most every infant, but close off over time after birth. In cases like Chloe's those ducts usually do not close right away but instead stay open. If hers stays nice and open, then we could bring her home as soon as 2 weeks after birth and monitor her from home (being trained in how to care for her and watch to watch for). At this point, she would need her first heart surgery at 6-12mo, then 3-4 years. If that duct isn't staying open, then they would do surgery around that second week after birth to surgically make that duct stay open, around 2-3 weeks after birth, then next surgery would be more like around 12-18months (because the shunt would keep it open longer), then 3-4 years. Dr. Swanson said she probably won't ever be a track star or play in the olympics, but that she most likely can run track or try for olympics...meaning no restrictions, but monitor activity. However, the downside to all of this is that around age 20-30, Chloe would most likely need a heart transplant. That was the part that got me the most. For more about Chloe's heart, diagnosis, and treatment, please read Part 2.

"I cry aloud to the Lord; I lift up my voice to the Lord for mercy. I pour out my complaint before Him; before Him I tell my trouble." Psalm 142:1-2
"You are my hiding place; You will protect me from trouble and surround me with songs of deliverance." Psalm 32:7

Our final appointment of the morning was to meet with an OB nurse and then OB anesthesiologist about delivery at Children's, and I might note that both of them started off by saying, "Trisomy 22? Really?" Sigh. The best way to explain it is that Children's is just that-a children's hospital. However, they are equipped to deliver here so long as the mother is healthy enough to qualify. Thankfully at this point, I am considered healthy enough to deliver there {though we still have questions such as how long am I allowed as a patient after birth, considering with my other deliveries I was in the hospital for 3-4 days}. The anesthesiologist explained this is pregnancy, there is still time to develop things like high blood pressure, pre-eclampsia, and so on and at that point, we re-evaluate where to deliver. There is a hospital called Truman right near Children's, with a covered bridge for transporting patients from one hospital to the other. If I do become high risk, then I would deliver at Truman, and they'd take Chloe via that bridge to Children's NICU asap.

"He gives strength to the weary and increases the power of the weak." Isaiah 40:29

By this point we had a break for lunch, but were both already exhausted from the long morning and overwhelmed with all the information we were learning and attempting to soak up. We found some encouragement in the thought that there's a chance we can bring her home after 2 weeks, or if she did need surgery, that it'd be between 5-6 weeks from birth we could bring her home as compared to the months we expected to be there. And we were thankful in general that her heart is even operable. We were thankful that I passed the health requirements to deliver there. We were thankful for the kind nurses, sweet fetal sonotech, and amazing compassion from Dr. Swanson. But we were on the verge of drained, and still had a long afternoon appointment ahead.

After both of us nearly falling asleep in the waiting room waiting for our next test, we met the next sonotech and headed back for the two hour sonogram. On paper it should have been from 1-3pm including the counseling/discussion with OB doctor at the end. However, Chloe, in true Chloe+ultrasound fashion, was beyond stubborn. By 2:45pm we still had a ton of measurements to try and get since she was not cooperating (again). At one point she scared both us and the tech by making us believe the blood flow from me to her through umbilical cord was not flowing properly, which is a huge concern. However our sonotech got creative and just watched her without moving for a few minutes, and was able to determine that Chloe simply had the hiccups. {This is where the three of us all sighed heavily and the tech called her downright naughty}.

"My frame was not hidden from You when I was made in the secret place. When I was woven together in the depths of the earth, Your eyes saw my unformed body..." Psalm 139:15

Our sonotech was amazing. We told her that we understood that the doctor would need to discuss the results with us, but that if we sat through one more silent ultrasound without knowing anything, we'd lose it. She was kind enough to say that unless it's something major, which if we wanted she would gently explain, but most likely if she was quiet it was simply because she was concentrating, otherwise she would talk us through things. Hence why we could tell when she got quite watching the blips that shouldn't be there during the hiccup episode. She was kind and encouraging, asking about our story so far, joking with Alan about candy crush, and telling us of her own 2 year old and episodes of tantrums and mommyhood. It was the most laid-back part of our long day. Thankful for that.

Highlights from the ultrasound:
*No fluid in brain that should not be there. {Very first sono at 19weeks showed fluid in the brain}.

*No fluid in or around lungs that should not be there. {Again, this was found on the first ultrasound}.

*Looks more like cleft lip than cleft palate-lip is simply the lip, palate is hole in the roof of the mouth. Cleft palates are hard to identify, if impossible, on an ultrasound. It's more so wait for birth and see. For this reason, they were surprised that so far we've been told from our first ultrasound and our 2nd in Topeka that it's a cleft palate already. So we praise that for now, it only looks like cleft lip.

*No club foot!! What most likely was the case at the Topeka appt. is that her foot was simply squished up against my uterus at such an angle that it appeared to be clubbed. However, there is only one straight-on view that can really determine if it is clubbed or not, and Chloe was, in the end, nice enough to allow us to see that view on both feet. So praise that there's no club foot!! To us this was minimal, but at the same time, would have been yet another hurdle/challenge in the future. So thankful this is now not the case.

*Possibly less fluid on the neck than originally. At Topeka, it measured 10mm (normal is less than 5 I think, with her first being 9mm). At Children's, it measured around 8 point something or other mm. However, this could also be off a bit depending on exactly how it was measured in Topeka. We're going to choose to focus on the fact that for now it appears smaller {which the fetal cardiologist said can greatly diminish and go away before birth-pray this is the case!}

*For the first time, we saw BOTH kidneys, and they looked to be good size and functioning properly.

*Overall, it appeared that everything was looking good-brain looked good, organs {other than heart} looked good and were all seen, etc. The only thing that looked off is that they measured all her arm and leg bones, and they look to be off just a bit, which is called asymmetrical, meaning one side of her body might be slightly smaller than the other. However this is a common trisomy trait.

*She is small. This is to be expected as Inter-Uterine Growth Restriction (IUGR) is common with this trisomy. This simply means she's smaller than she should be for her dates. Right now she weighs about 1.5lbs, and the goal is to get her to at LEAST 4lbs by birth, but HOPEFULLY and PRAYERFULLY to 5lbs or more. If she is under the 4-5lb mark, it makes things really hard to help her/intervene as they do not make equipment/tubes/etc. small enough to help at that point. This is hard for my mind to grasp considering our son was 8lbs and our daughter 7lbs13oz at birth, and in general since their daddy weight over 10lbs at birth! However, I'm learning from other mosaic trisomy 22 families that this is really common, and gives us hope.

Along with her measuring small, they take a look at measurements of her leg and arm bones, head circumference, stomach and determine what percentile she is on the growth chart. Chloe is at the 10th percentile. The cut off/the worry mark is at the 10th. As in, if she drops below that 10th mark, we begin to get very concerned because she's not growing anymore. Or, she could stay at the 10th percentile mark throughout the rest of the pregnancy {the facebook group we're a part of now had three people say their children did that the entire pregnancy} and there'd be concern about her size at birth, but it's better than dropping below. There is a chance if she drops below or stays right at 10th that I might have to be monitored in the hospital to keep an eye on her. HOWEVER, there's also that chance that she can GROW. We PRAY she grows. We PRAY she increases on the growth chart. Her name, after all, does mean BLOOMING.

Because of her size on the growth chart, what normally happens would be ultrasounds at Children's every two weeks to chart her growth. Because we live 2+ hours away, they've agreed to let us do the next 2 week ultrasound back home with our doctor, then the following one at 2 weeks is when we're back at Children's, and after that another one back home (so alternate where it's done, just so long as it's every two weeks to keep a close eye on her).

There's also still a bit of clarity still needed on due date. Please pray for wisdom and discernment of the doctors, because even though it might be off one way or another by only a few days to a week, this means a HUGE difference when discussing her percentile on the growth chart, as well as when to deliver.

"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not get burned; the flames will not set you ablaze. For I am the Lord, your God...Do not be afraid, for I am with you..." Isaiah 43:2-3;5. 

We felt overall encouraged from the ultrasound, and in general from the day, but also getting concerned about her growth restriction. At this point one of the first of a few OB's we'll be having came in and met with us. He started by explaining how they could tell it wasn't a club foot {to which our sonotech was behind him, smiling gently at us because she'd already explained all of this even though she wasn't necessarily meant to}. But after that, things got much more serious. Without going into too much detail here/specifics on the blog, I will say simply this was the hardest part of the day for us as the OB began to explain what complications can take place if Chloe does not grow in-utero {if she starts to drop under that 10th percentile}, and in general the risks still associated with this pregnancy because of the fact that it's not just heart condition, and it's not just size restriction, and it's not just a trisomy case, but that the combination of all three make things much more complicated. We understood all of this and what the worst case scenarios are, but wanted to be more positive and talk through what the weeks before and of delivery looked like-at what point should we head to KC to be here incase she'd come a couple weeks early, what is delivery like here at Children's and so on. Instead, the OB camped out on the complications, the worst case situations, the higher risks and negative statistics. At one point Alan, trying to consider best possible scenario and get to the positive, asked, "If she makes it to full-term, or at least late third trimester, when would we head over or when would you want us close for delivery, or at what point do we set the c-section date?" The OB answered simply, "We don't". He said for now, we focus on her growth and see what it does, we monitor with follow-up appointments every 4 weeks here at Children's, and we keep my regular weekly heartbeat checks back home with Dr. P and the every-other-week ultrasounds, and in general wait till I'm into third trimester with more information before we'd start to even think about delivery. We were frustrated that he never talked about the positive or best case scenarios...{Insert where I lost it after he walked out of the room, and where the sonotech herself agreed he was not exactly encouraging. Weary, scared, overwhelmed would best describe this particular moment}.

So thankful that our God is bigger than that doctor. We'll trust and respect all of our doctors, but just saying that we're thankful there's a Greater Physician who can make Chloe grow, should He will it to be. We pray for that. Pray, pray, PRAY SHE GROWS. I find it no surprise, I find no irony in the fact that we chose her name before she was conceived, always liking the name Chloe, and that we didn't even consider its meaning other than it was Celtic and we liked the sound of it. The Lord already knew that her name means blooming, and He's already brought her this far {considering we were told at Christmas to go home and wait for no heartbeat}. We pray to Jesus that He would continue to bring healing and GROWTH.

Thankful the Lord brought us safely home through the rush hour traffic. Thankful that the kiddos were well-cared for by their aunt Jill. Thankful for the fun they had making valentines and cookies with her. Thankful for the warm and cuddly hugs of our littles. Thankful that overall, the day was mostly encouraging. Thankful the first appointment is done and we just take things one. day. at. a time. We will post Part 2 about Chloe's heart condition soon, but for now, I must potty train a toddler and have been asked to build a race-track with a preschooler, who's hair resembles Alfalfa, and who has been in the same pj's since Monday night.

"...Whatever may pass and whatever lies before me, let me be singing when the evening comes. Bless the Lord, O my soul, O my soul. Worship His holy name. Sing like never before, O my soul, we worship His holy name."

{Spotify users: Look up 10,000 Reasons by More Than Rubies}

Saturday, February 8, 2014

Chloe's Facebook Page

For those who follow the blog, but do not know us on facebook, we've set up a facebook page for Chloe where we are leaving quick prayer requests and updates when we do not have the time to blog them. Find it by simply searching for Our Chloe Elizabeth on facebook.

Friday, February 7, 2014

Appointments On Monday at Children's Mercy

I've been procrastinating on this post. Mainly I guess because I don't know what to anticipate or think myself. If get get my hopes set on it going really well and getting a lot of answers, we probably won't and I'll get discouraged. In a weird way our doctor mentioned that we might not get many answers on Monday as the doctors at KC will probably want to sit down and go over all appts/tests/etc. at once to discuss Chloe, and at that point we'll then get some results. Thankful to know this as I am the type that if they say nothing, I fear the worst, so we can now go into this knowing it's ok if they don't say much. So I've tried to not think too much about it. But alas, it's late Friday night...only a few more days and then we'll see her heartbeat on another screen. We'll watch the splotches of red and blue and how they navigate her heart. We'll talk to genetics...again. We'll meet with new doctors...again. So much new stuff... So for now, instead of worrying too much, just going to continue to lay low as a family, continue to cuddle the kids this weekend, and just breathe until Monday.

Here is a timeline of the day. Many of you text/email asking what time appts are so you can pray, so below I've listed the appointment time, and ways to pray:

-Sunday afternoon our sister-in-law will arrive to watch the kiddos while we head to KC. 

  • Please pray for safe travels for her down from Iowa; for safe travels for Alan and I over to KC to stay with friends that evening; that we can get our van looked again tomorrow (Saturday) so that it's safe for us to take to KC/Praise for friends willing to let us borrow theirs as backup should it not be able to be fixed/cost too much this round. 
-Monday Appts
  • Please pray we can figure out where we're even going! Never been to Children's before. Safety in travel there and also back home that afternoon. Pray weather holds out and no snow. Pray for wisdom, knowledge, and discernment of doctors and staff we'll interact with.
-8:30am Genetics
  • Not even sure how to pray for this one. They're hoping to gather more info, but not sure what new info we could give them. Pray for our endurance in repeating this whole journey over again and answering all family health questions again.
-9am Echocardiogram for Chloe's heart
This is where they'll do at least if not more than an hour specifically on Chloe's heart, learning how it's developing and functioning in hopes of learning what they can do for treatment.
  • Please pray for wisdom of Dr. Swanson to know how Chloe's heart is functioning. For Chloe to cooperate and let us get a good look. For patience for me especially-these sonograms are so hard in that they don't tell us a ton of information right off, so it's a lot of silence and just watching the screen, not knowing what's normal and what's not. Dr. P also warned of the whole laying on my back for that long can make me nauseous-already dealing with a bit of nausea yet these days, so pray I can get through this without the nausea.
-11am Meet with OB Anesthesiologist
  • Policy for Children's to deliver there is that I have to be approved health-wise to deliver there without risks, otherwise I'll have to deliver at a nearby or adjoining hospital. Pray I'd be ok to deliver at Children's. 
-12-1pm Lunch Break

-1pm-3pm Sonogram with Maternal Fetal Medicine 
In other words, over an hour of sonogram looking at every detail of Chloe to make sure we know all aspects of what's going on, from cleft palate to club foot to heart to kidneys-everything, then meeting I think with one of the doctors to go over everything. 
  • Please pray that again, Chloe would let us get a good look and cooperate. The nurse mentioned that they'd like to try getting the 3D or 4D images too, so let's pray this works. At Topeka they tried to do 3D of her cleft palate, but she was fairly insistent that it not be seen if only for a split second. 
  • Pray that all her organs are looking and functioning as they should. 
  • Pray that the fluid on her neck is going away/not increasing. In other words, pray it's GONE. 
  • Pray that they can see her cleft palate well enough to know how they might like to treat it when that time comes. 
  • Please pray that nothing else looks out of the ordinary with anything else. 
  • Pray for safe travels back after a long and exhausting day. Pray safe travels home on Tuesday for our sister-in-law. 
Thank you all again for your prayers and thoughts. One individual even commented that she's wearing red each day this month (Feb is Heart month) for Chloe. I had tears when I read that-such a great gesture. And I'd probably do the same if I owned anything maternity that's red ;). You know who you are, and it means the world to us that you're doing that. Perhaps wear red on Monday for Chloe, and if you do, send a pic we can post on her page :). {On that note, I might just go lay out the kids' clothes for Monday and choose something red for them to wear as well!}

He is the Great Physician. Resting on that truth tonight.