Saturday, March 15, 2014

Song for the Day

Posted this on our facebook page, but for those following the blog that don't have us added {and feel free to!} here is a new theme song for us. It's fun and the kids love it, but more importantly, it's full of scripture references we've been clinging to, and brings hope.

Wednesday, March 12, 2014

Children's Mercy Visit #2 Recap

This past Sunday our little family traveled once again to Kansas City for Monday's tests. HUGE thank you to our friend Mandy and her family for showing us love, hospitality, Chipotle ;), and playtime with the kids.

Here is a breakdown of the appointments we had and what we've learned as we continue on this journey...

Maternal Fetal ultrasound/Meet with OB:
*Ultrasound revealed a possible either obstruction in one of the kidney ureters. We learned that a ureter is the tube that connects the kidney to the bladder. In Chloe's case, it's either an obstruction, or something called reflux, where the urine doesn't pass out of the bladder, but instead backs back up the ureter. We'll continue to monitor this. Our sonotech wasn't too surprised or alarmed, however Chloe's new neonatologist said it could either go away or not be anything, or it could get complicated. If it's an obstruction and she looses kidney function in that kidney, for example, this hinders how she would do with heart surgery. We're a little nervous now knowing it could either be nothing, or it could mean major things. Only time will tell.

*A Biophysical Profile {BPP} was done during the ultrasound. Basically it is a set of 4 different tests/measurments/findings worth 0-2 pts. It's either a pass or fail, and if she fails any of the 4, not receiving a total 8 pts, then she fails overall and would need a stress test {similar to the BPP, but with a few more added points}. If she doesn't pass a stress test, then we consider delivering early as she's no longer thriving in the womb as she should be.

The 4 things tested during a BPP are:
-Taking breaths/breathing. She has to do this at least a few times within 30min period. Does not have to be consecutive or for the entire time, but at least show some breaths being taken. Made us nervous, but finally showed us some breaths.
-Measure amniotic fluid. This ranges from 5ish being worrisome low amniotic fluid to high around 25. Chloe's measured 8 something, which made us a bit nervous that it's on the low side, however they also look for a pocket of fluid at least 2cm by 2cm as well, and thankfully Chloe had one of those pockets of fluid, so she BARELY passed this one.
-Muscle tone. This is measured by watching her hands/fingers and feet/toes to see movement. She did fine here.
-Overall movement. Passed with flying colors. Earned extra credit. Not really, but in theory. She was yet again a pistol, all pancaked in there. Sonotech wasn't even sure if she was transverse (sideways) or breech at first because of the odd position she was in. At one point there was a huge belly-quake, even making the sonotech jump, so Chloe DEFINITELY passed this portion.

We will be doing more BPP ultrasound tests here in Manhattan in the coming weeks. Please pray she passes and does not worry us with needing stress tests!

*OB discussed weight. She is just below the 10% percentile in terms of body measurments, and yet she gained a whole POUND this month which is HUGE. Because she gained weight, it did show overall growth, so she is ok on the growth chart (though again, she's making us nervous since the overall percentile is under 10). The OB then explained different interventions that could be done at birth depending on what weight she is (6lbs means more intervention possibilities vs. 3-4lbs what they can/cannot do to help her). This was hard to hear and although she gained an entire pound this month, the OB seemed leary that she'll reach that 4lb mark at birth. REALLY praying Chloe proves him wrong!!!! Also, at this point, we're planning on relocating (and using the Ronald McDonald house) at 38 weeks (first week of May), with delivery at 39 weeks, though a date is not being set yet in hopes of if not preterm labor or concerns, perhaps getting me close to 40 weeks in an attempt for her to put on more weight at the end.

Fetal Echocardiogram:
Nothing new to report. Heart condition still looks to be the same with no knew shockers or surprises.

Integrated Consult (AKA Round Table Discussion with Chloe's Team):
*Intimidated is an understatement. Something so surreal to walk into a conference room and see SO many people. Don't get me wrong, we're so thankful for this chance to hear everyone, give our own input, and hear them talk and ask questions of each other, all in the name of helping Chloe. But it was intimidating to walk in and see her fetal cardiologist (heart), 2 nurse coordinators (heart/overall health of Chloe from now through however long we need them till she isn't in infant care/baby anymore and into her toddler years if I understand correctly), neonatologist (baby doctor) and his student in training, social worker, geneticist, and palatative care (they are somewhat like patient/family advocate, listens to us, helps give us a voice, makes sure we're all on the same page from now until forever practically). After introductions we were asked to sum up what we've learned so far. Felt like a pop quiz, and we both felt like we failed, but were told we've got an amazing grasp on all of this and greatly understand it all.

*Fetal Cardiologist's report: Re-explained her heart condition. Her prediction is that Chloe will not need the first of the 3 surgeries as one of the ducts looks to be nice and open. The other duct that in most babies closes off-they will let it close off naturally in Chloe as well and monitor how she handles this. If she's stressed, they'll try medicine first to re-open that duct, otherwise final resort is the shunt surgery. At this time, however, she's pretty confident Chloe will not be needing this first surgery (which we pray and praise is the case!).

*Neonatologist: Because of Chloe's MT22, the hardest thing is not knowing what all she could have from different lists of multiple traits. Here's a few possible traits she could have, and could have all or none depending on severity of cells that are mosaic (have that extra chromosome). For this reason, he said she will be in the NICU a MINIMUM 4 weeks for monitoring, testing, observation, etc., and could be longer if she does end up needing that heart surgery. We're to expect no feedings the first few days due to stomach/intestines so sensitive in such a small weight (nutrition fed through veins those days instead), and will most likely need feeding tube or g-tube (in belly) for feedings due to clef lip/palate. Also, he is concerned about that kidney ureter, so need to keep an eye on what happens there.

Overall, nothing too surprising or shocking, yet at the same time, there is nothing easy or simple about this process. Even appointments like this are overwhelming and exhausting for us. I believe the geneticist used the phrase, "We're thankful you guys understand our lack of understanding". Meaning, we understand that even the doctors and specialists do not know what to expect in her case until she's here, and even then, constant monitoring to know more. Many might look at this visit and say yay, nothing new and major, and most likely no heart surgery right away! But we look at it and think...

..We're concerned if she doesn't pass one of the BPP tests...
...How will she fare with a stress test if needed?
...If she doesn't pass that test, would we deliver immediately?
...Concerned that she barely passed the growth percentile measurement...
...What's up with that kidney? Will it improve?? Will it complicate things?
...How often do we need these ultrasounds?
...Do we still relocate at 38 weeks? Do we go sooner if we're concerned? How will our children do with all of this??
...What will those weeks look like in the hospital, in a NICU, with our other littles in tow, having friends watch our kids and missing them when they're not with us, but also knowing the time we'll need alone with Chloe...
...How does one pack for 6+ weeks away from home with littles? 
...New obsession of cleaning and organizing so the house is ready for when we would bring her home...

Thank you all for your many prayers that are getting us through this. There are days that are overwhelming, and other days we're just trying to be a family, raising littles, holding down a job, running a house...but some days, it's so much to even think about, and thus, still taking this all one day at a time.

In terms of prayer...hoping you can glean some ways to be praying from reading through this email. Please also pray for continued health for me (aka no preterm labor), that she'd continue growing, pass her tests, that God would continue to provide and meet all of our needs. This week we were BEYOND BLESSED to receive an anonymous gift that enabled us to get the van in the shop today and fix our brakes, radiator, and grocery money this week!!! God is good, all the time, and all the time, God is good {That's a fave Leonard S. quote there of course ;) }. Thank you to all who have helped us, loved on us, and prayed us through this. If you have further questions or want us to explain something more in depth, feel free to email us privately and we'll gladly do our best to explain.

Mosaic Trisomy 22 Symptoms

Posting this in an attempt to shed a bit of light on some-SOME-of the many different traits/symptoms that Chloe could potentially have. She could have one, three, none, all...most likely not all, but still we will not know the extent of how many cells her mosaicism affects until she's born. The following list was compiled by a friend on a facebook group we've joined-this is from her blog. If I could find a simple list like this on a medical site, I would share that link, but alas, seems parents of those with MT22, or those who have it themselves, are the best researchers...

What to expect:

(The research I have obtained about Mosaic Trisomy 22)

Mosaic Trisomy 22 is a rare chromosome disorder in which the 22 chromosome is present 3 times. The typical chromosome would have only 2 cells in it. The severity of this chromosome disorder will vary depending on how many cells throughout the body will obtain these mosaic chromosomes. Here is a list of some clinical features that have been recorded in Mosaic Trisomy 22 patients:

- Microcephaly
- Abnormal Ears
- Webbed Neck
- Cardiac Abnormalities (Such as Chloe's heart condition)
- Long Fingers
- Kidney Problems (Missing, Extra, or Underdeveloped)
- Growth Retardation
- Shortened Limbs
- Mental Delay
- Hemidystrophy (abnormal development of each side of the body)
- Drooping Eyelids
- Elbow Malformations
- Abnormal or/ missing fingers/ toe nails
- Absent Ovaries/ fallopian tubes
- Underdeveloped ovaries
Saturday, March 8, 2014

Planning Ahead...Anyone Have The Following To Borrow???

Trying to plan ahead on some stuff, and not wanting to spend the $$ {gonna be spending that on van, gas, trips, etc}, so hoping we can find something along these lines to borrow from someone. Considering everyone in the Little Apple metropolis is expecting between now and fall, and that we all share back and forth from the same people, hoping to put dibs on these now!!! :)

Something along these lines as bassinet to keep in our room by our bed for the first few...well, who knows. Depends on if she needs surgery or not. Or, we do have a pack n play if someone has the top attachment for newborns. .
Fisher-Price Rock 'n Play Bassinet - Rainforest Friends    Fisher-Price Newborn Rock 'n Play Sleeper Graco Pack 'n Play Playard with Newborn Napper Station LX - Monroe Graco Pack 'n Play Playard with Newborn Napper Station LX - Monroe

And something along these lines to have by us the rest of the time ;)

Fisher-Price Bouncer - Pink Butterfly Ingenuity The Automatic Bouncer - Coco Café

If you have something along these lines that we could borrow {whether you're in town, or back home in Iowa and we could have family bring it}, please email us at Also, if you're in town and it's available to borrow, we could get it anytime{want to make sure I have time to wash it up/have it ready before we'd head to KC near the beginning of May}.

Thanks to all for helping us out!

Keeping It Real: Comedic Anecdotes From The Week

OH how it is been a LONG week. {see previous post}. Not sure how we'd get through these days if it weren't for the laughter our children bring and this crazy family makes. Chloe has no choice-she MUST have a sense of humor to fit in with us. Here are some stories from this week... 

Working on potty training Abi. After she was done on the potty, she hopped down and I put her new pull up on, forgetting to help her wipe first or give her any TP. "Mama! Ew fordot to ipe me!" So I got her some TP, wondering how in the world she was going to wipe with her pull up already on, but then witnessed her wipe down and around the toilet seat to clean it, then toss the paper in the toilet. Hmm...guess that works too.

At Target with both kids yesterday to get some fresh air, and we perused the baby section. Saw the perfect taggie for Chloe, but we have already bought her bird taggie. This one has a cute little elephant on it {and some of you know there's an elephant story that goes with this pregnancy, so it was PERFECT}. Texted a picture to Alan in an attempt to justify Chloe having 2 taggies, and said we can have one for home and one in the diaper bag at all times.
     My text, "Since Chloe has extra chromosomes, she's entitled to an extra taggie."
     Husband, "But since it's mosaic {not in all cells}, she only needs PART of an extra taggie. Can you buy             PART of one?"

Sweet moments: taking the kids for a walk and noticing Abi and Isaac holding hands. Precious. Hope they are always close and love each other. {Although they don't need to hold hands when they're older. That's kinda awkward}.

Hanging out with a friend yesterday-a sweet friend who ALWAYS encourages me in the Lord, even though she doesn't always know she's doing it ;). Watching our sons play in the mud, and then attempt to make their own mac and cheese. Hearing Abi tell her 1 year old daughter, "I no like dat baby doll!" But Abi, that's not a baby doll, that's Elsa. You know Elsa. Why don't you play kitchen set with her. "No, baby doll go way!" Oh Abi, that wasn't nice. Can you go tell Elsa sorry for being mean to her? All the while trying to not laugh at the fact that my daughter thought her sweet little friend was a real live walking giggling baby doll. Later I got to hold my friend's brand new pink bundle, and Abi kept saying, "Mama put baby doll down on floor." Abi, her name is Marjie. Can you say hi to Marjie? This is what baby Chloe will look like. "Mama put baby Chloe on da floor!" Oh boy. I see jealousy issues in the future with Abs.

The fact that every time the kids and I go anywhere while Alan's at work, Abi gets excited and says, "We go find Daddy!!!! We go find Daddy!!!!"

Alan was working on an old laptop for someone this week and made the comment, "This is the laptop we had when Isaac was a newborn. This is the one he got sick on!" {Referring to the time when Isaac as a one week old infant spit up his milk EVERYWHERE on the laptop, but it still survived}. Somehow our son has inherited my great memory, and has great ears, but we forgot about this, and to no less than three different people he has randomly said, "Guess what!!!! Daddy was using the laptop dat I frewd up on!!!! I frewd up on it when I was a baby!!" Oh child. Not everyone you meet needs to know this fact.

Isaac, "Mommy, I need to put Taggie high up because my hands are not sharing Taggie!" {proceeds to play tug of war with himself and his taggie}.

That moment when you're skyping a design client slash awesome Iowa friend to work on book cover design slash vent, and your daughter is standing beside you, and you realize she's just pooed in her underwear. Followed that next day by the moment you see your daughter climbing all over the couch with her pull up half off and poo smearing on everything and you panic.

Speaking of Abi and her "rocks" as Isaac calls them...ever since she was baby, she thinks doing that is ok in the bathtub and has ruined MANY if not ALL of their bath toys from code brown baths. We gave up trying to clean them and only invest in the $1 toys at the entrance of Target if they get a bath toy. At the moment, their only bath toys are plastic cups. You should seen the PURE JOY on my son's face yesterday when he found a rubber ducky in the playroom and ran out shouting, "Look!!!! Abi didn't poop on this one!!!!! I found a bath toy that she didn't get dirty!!!!! Oh Mama, can we PLEASE play with it in the bath tonight!??!? PLEASE!!!?" You can tell how bath-toy deprived they are if he is this JOYFUL about one tiny rubber ducky.

Oh sweet Chloe...perhaps you should be more prepared to be a part of this crazy family than us preparing for you <3

Next Children's Mercy Visit Comin' Right Up...

It's been a long week. Long is an understatement. Overwhelmed is a better word. Struggled this week with some aspects of pregnancy that I'm not ready to blog about yet, but hope to in the future so long as it brings hope and help to other pregnant women. But for now, we'll glaze over that and just go with the fact that it's been a LONG week. When you've hit that point where you no longer open the "What To Expect" book because you need the authors to publish a "What You Won't Expect" book.

Monday is our next appt. at Children's Mercy in KC. We head over Sunday evening with the kiddos to stay at a friend's house. A dear, sweet, kind, willing soul who will also be watching our kids during the day on Monday during the appointments. Here's the rundown for Monday:

9am Maternal Fetal Health ultrasound/meet with OB {ultrasound for growth percentile and Chloe's overall development.
      *Please pray that there are no new causes for concern, that she's growing BIG. Pray she exceeds that 10% on this ultrasound.

10am Fetal Echocardiogram {Is that even the right word anymore? I need a crash course in medical lingo!} and meet with Dr. Swanson, Chloe's Fetal Cardiologist.
       *Please pray that her heart would be looking ok as well-no new concerns since last time. Pray also for knowledge to grasp all that we're learning from Dr. Swanson about what surgeries, what will be monitored at birth, and how to care for her after she's home in terms of her heart health. {Again with the thought of investing in a medical dictionary}. 

11am Round Table discussion with Chloe's doctors, social worker, genetics, nurses, etc.
       *No clue how to prepare for this conversation. Very intimidated by what might be discussed. Please pray for peace during this time, that I wouldn't sob through it but instead can focus and comprehend everything.

Break Noon-1pm
       *Hope to meet up with some friends from church who will also be there that day and spend a few minutes in prayer. Please pray for them that test results would be good for their sweet little girl and that all He would be present in their situation as well. 

1pm Tour Delivery area, NICU, PICU
        *SO overwhelmed at the thought of seeing little wee ones hooked up to tubes and machines, but in a weird way thankful we'll know what to expect. Pray for peace to wash over us. 

Additional prayer requests:
*That the kiddos would do good traveling and at our friends house.
*For safety in travel to and from and all over.
*For wisdom in knowing what questions to ask.
*For peace through all of this.

~Thank you, Terri G, for the AMAZING meal and fellowship!!!
~Thank you, Susie and also the Lewis' for the ADORABLE clothes!!!
~Thank you, Peggy, for the last minute babysitting!!!
~Thank you, Grace S., for the last minute date today for parental sanity!!!
~Thank you, Nurse B. and Dr. P., for not retiring this week due to my insane amount of questions!!!

Sunday, March 2, 2014

Ready for Spring

Received such a sweet card from a sweet friend in the mail a couple of weeks ago, along with a couple packets of beautiful flower seeds to plant this spring. Loved what she said in the card...

Dear Jodie,
I bought these seed packets last week because they reminded me of you...I have kept them all week, in part, because I wasn't exactly sure why I bought them for you. I don't even know if you like to garden. 
But I think the reason I felt so inclined to buy them for you is because they reminded me of hope. Walking into the store from the bitter cold, with slush on my boots, there they were: the seed packets on display-in hope that spring will indeed come. The hope that God miraculously brings life out of the relentless winter. 
I won't pretend that I know or understand the heartache that you are experiencing. But I do know the grief of life's unexpected longings, and what it feels like to wait in hope of the Lord's comfort and promises. So it is with that ache and longing and hope that I pray for you, and for Chloe...

So thankful for that sweet card. And the beautiful flowers we'll plant this spring. 

Clinging to the hope of spring even in the longest of winters.