Thursday, May 29, 2014

5-29-14 Update -- SICKNESS

So, odd fact from the last week in the Gerling family.  Only one member of the Gerling family has not been on medication this past week.... Chloe.  Two weeks ago, on Thursday morning, Isaac and Abi woke up hacking and sneezing, which immediately removed them from the possibility of going to see baby Chloe.  I (Alan) stayed in the room with them Thursday and Friday so that they would lay low and start to get better.  Saturday and Sunday ended up being the same story, but by Monday, after several days of meds and no fevers, we were okay sending them to friends' houses again.

Then I woke up with a nasty cough on Monday morning.  No NICU visits for me Monday.  And Tuesday.  And Wednesday.  After chatting with our doctor back in Manhattan, I went to the urgent care facility because I was starting to wheeze and my lungs were starting to gurgle.  They put me on a Z-Pack and an inhaler and sent me home.  By Friday, Jodie was starting to get some sinus stuff and was wearing a mask to visit Chloe in the NICU, but on Saturday, she woke up with a cough like the rest of us.  Since none of us were comfortable visiting the NICU at this point, we gave up and headed back to Manhattan for a couple of days to relax and get out of this tiny room (which didn't used to feel all that small....).  Jodie was a little worse Saturday night, so she headed to K-Stat Sunday morning to get ahead of whatever she was getting.

So, the rundown.  Isaac is feeling better after his course of antibiotics.  Abi's cough is still hanging on, so after an adventure to find a pharmacy that had a pediatric nebulizer (BTW, if you're in the KC area, Georgetown Pharmacy in Merriam is a cool little pharmacy that felt like a small town store that had an old school soda fountain in it), she's doing breathing treatments.  Jodie is on the verge of a sinus infection, so she's on antibiotics to get ahead of it (and is feeling much better today).  After a second visit to urgent care, I am now on my second round of antibiotic (a much stronger one) and inhaler, with bronchitis and a sinus infection and probably a virus underlying it all.  On Tuesday, the doc thought it would still be another 4 or 5 days before I could go visit the NICU (when my cough is gone will be the sign).  If I've been feeling 30% for the last two weeks, I feel about 60 or 70% today, so I'm hopeful by tomorrow I might be well enough to see my little girl again.

So, how's Chloe doing?  Well, she is on a weight gain journey.  The only tube she has at this point is her feeding tube, which is feeding her on a constant basis.  She is on full formula feeds, needing no extra nutrients at this point.  With her hiatal hernia, she struggles with spit-up (hence the constant feed), and has been gaining slowly.  Each day, they want to see her gain 30 grams or so, and after a week or so of good weight gain, she's been maintaining the last couple of days, so they might put her on a high calorie, high protein formula.  They continue to monitor her heart, and it continues to be balanced well, so at this point, she simply needs to grow till she's 6 or 7 pounds, when they'll put in a G feeding tube (?), and possibly fix her hernia.  If all goes well with the feeding tube, she would go home with us at that point.  So, math time.  30 grams is a little over an ounce.  At this point, she is 4lb 3oz (I think), and she needs to be somewhere between 6 or 7 pounds.  There are 16 ounces in a pound.  So, we'll probably be here a while longer....

That said, what an awesome praise it is that the only thing we are working and concerned about at this point in her life is weight gain.  She isn't taking any medications!  Also, we've started discussion with the cleft lip/palette team about doing a surgery at 3 months to pull her lip together and begin stretching it out.

So, please pray that we all would get healthy soon.  Pray that Chloe will GROW!!!!!!!
Sunday, May 18, 2014

Dear Chloe: Today Is Your Due Date {Part 2, Your Birth}

May 18th, 2014

Dear Chloe,

Your amazing Daddy already wrote of your birth, the unexpected date, but as you will learn as you get older, boys have a way of telling you what the garden looks like, but not describing the flowers blooming ;). This is your Mama's attempt to fill in the blanket of colors over the garden that was planted that day. This will probably be long, but I don't want to forget a single detail.

We thought you were coming on Monday, April 28th. We already had your Grandma Sherry and Papa John on the way to stay with Abi and Isaac. Daddy and I packed the bags for a month away. We even had a bag just for you, filled with onesies, your taggy, some swaddle blankets we hoped to hold you in. The van was packed down. I remember standing out there, Thursday the 24th, as the sun faded into beautiful hues and the darkness and stars set in and praying for the days to come. Grandma and Papa got in late, but we'd stayed up watching movies with your siblings waiting their arrival and putting finishing touches on all of the packing, lists, and to-do notes.

Abi and Isaac camped out on the living room floor, and your Daddy and I slept on the couches so that Grandma and Papa could have our bed. I laid there sleepless most of the night, thinking of how hard it would be to leave your brother and sister for days on end, and yet also in excitement for getting to meet you soon. I texted friends at 2am for prayers. I cried for the unknown. I think I slept 4 hours.

My alarm went off at 6am, but I woke minutes before and quieted it so it wouldn't wake the rest of the still house. In the silence of the morning sun rising, I prayed for the day ahead. I begged the Lord to watch over us, watch over our family, and prepare my heart for all that was to come, that He would be the cloud by day and fire by night leading our way, and thanking Him that you were nearly here, and thanking Him for all He'd brought us through. After getting ready I took a few more bags out to the car. The sun was nearly up and awake, and the morning birds were singing songs to their Creator. I remember standing there and taking it all in, knowing life in the city would soon become our normal and my eyes wouldn't see our beautiful Flint Hills for some time. I remember, somehow, thinking that if you were by chance born today, it'd be a beautiful day to be welcomed to this world. I left the lyrics to a beloved song in our family as our facebook status, without realize or knowing how true they were, "The sun comes up, it's a new day dawning, it's time to sing Your song again. Whatever may pass and whatever lies before me, let me be singing when the evening comes. Bless the Lord, O my soul, worship His holy name. Sing like never before, O my soul, I worship Your holy name." {Matt Redman, 10,000 Reasons}.

We hugged our little family. There's something so bittersweet for any mama feeling the little arms wrapped tightly around her neck as she says goodbye to one child while heading off to welcome another into the world. I was so excited for them to meet you. But so sad to leave them. I got into the van and cried so hard I nearly got sick, and with your Daddy's crazing driving on Plymouth Road, I nearly made him pull over to get sick from the nausea. We only made it a few blocks before I begged your Daddy, with my window rolled down for fresh air, to just go to church so I could see if you were really going to make me sick or not, and take my nausea medicine. Eight in the morning and already the day was unpredictable and off schedule.

8:20am. Didn't realize that when I looked at the clock before we grabbed food that I'd need to remember that time later. After grabbing a breakfast sandwich and skinny vanilla latte at Panera, we headed on our way. The conversations between your daddy and I on our way to Kansas City danced between fear and joy, comedy and theology, with an underlying excitement the entire way. I nearly phoned my doctor when we hit the Kansas City city limits to say, "You're off the hook-we made it to KC," so no more worries of the 'what-ifs' that surrounded us, should she have come early in Manhattan.

We talked on the way of what we'd spend our time doing that weekend while we waited for Monday to come. In my mind, I pictured freaking out about the surgery all weekend. In your Daddy's mind, he wanted to walk the plaza, go to dinner, and take in a movie to pass the time. Upon arriving at the hospital for our last ultrasound, we left everything but my bag in the car. We only had the quick ultrasound, then were were off for our date day.

Our appointment was scheduled for 11am. We got there at 10:30am and decided to just go ahead and wait, thinking maybe they'd get us in early. 11am arrived and went. 11:30...11:45...finally at noon they called us back. We had our fun-loving, easy-going sonotech that we'd grown to love. She joked with us during the ultrasound and shared stories back and forth. Then the very last thing she measured was fluid. And things got quiet. Finally she sighed a heavy sigh and said, "Guys, the fluid is really low. It's 3.9. I'm not sure what the doctor will decide to do, monitor you over the weekend or what, but I'll give him a call." Things got heavy. We knew this most likely meant delivery, and we weren't shocked, but we were nervous. We wanted to be sure you were ok, and most importantly here safely. A nurse came in to ask a few questions and lead us to a labor and delivery room. I was still a bit naive thinking they'd just monitor me over the next day or so, until she handed me the clear bag and said, "Go slip on this gown and put any belonging in this bag." Then I knew things were getting real and fast. My knees were shaking from nerves as I changed.

After getting situated with all of the monitors, a team of three doctors came in to discuss delivery. While doing so, nurses were already drawing blood samples, asking when the last time was that I ate (and somehow remembered 8:20am), getting IV started, and taking medical history. All the while, the room was getting colder and colder, and I was shaking harder and harder, again, partly in fear of surgery, and partly the nerves of knowing we would finally meet you soon. I was crying due to both. Your daddy was holding it together SO well that I finally interrupted the nurses questions to ask him if he was freaking out like I was. He calmly smiled and said no. Liar. He was playing with his ring-dead giveaway at his nerves.

The doctors agreed that since delivery was planned for only a few days away as it was, that the best thing to do to ensure her safe arrival was delivery. They left to get ready, and I was left to hear all of the possible anesthesia options from the anesthesiologist. After the list of questions and info from the OB that'd be assisting, who I might add walked over to me and gently put her hand on my shaking shoulder and reassured me that this was His timing and He was with us in this, looked at Alan and said, "...and at that point they'll come get you and give you a gown, and, OH-make sure you have your camera!"

"Camera!? We didn't bring anything up from the car! We have nothing in here. We only came up for an ultrasound!"

The OB looked at her watch, then frantically looked at your daddy and said in a thick and beautiful accent, "You have just enough time! Run to your car and get your camera!"

We had only enough time to call or text a few people to ask for prayers, and then the show was on. Your daddy couldn't be with me while I got the spinal, so to take my mind off the pain, the anesthesiologist talked and asked questions and once figuring out I was from Iowa, and that he had attended University of Iowa, we quickly made friends, which made me trust him a bit more with jamming a needle in my spine, though I also knew the small talk was to distract me.

Your daddy came in to sit beside me and reassure me, and at 3:08pm, it was announced that you were here. I had dreamed of, and then worried about, this moment for so long. Would you cry? Would you be ok? I waited for a cry and didn't hear anything for what felt like forever. Your daddy was already with you in the other room so I asked the doctors and they said yes, you cried, it was just so petite and quiet that I couldn't hear it. About that same time I heard you cry from the other room. The most beautiful sound in the world, and the moment I feared would be filled with worry and concern for you was actually filled with the most amazing joy. I remember watching the clock to take in what time you were born, and smiling and crying, knowing you were here. Your daddy came back in to show me your picture since you were whisked away so fast. You were perfect. My heart swelled. Our family had just grown and our hearts beat louder with love than they ever had before. And we rejoiced!

It took five nurses to hand you to me for those precious first few minutes. Little did we know we wouldn't get to hold you again for nearly a week. 

Chloe Elizabeth
3:08pm  Friday, April 25th 2014
3lbs 7oz 15.75in

Perfect. Beautiful. Loved. You are our MIRACLE that many said would never happen. 

Dear Chloe: Today Is Your Due Date {Part 1}

Due Date Part 1: Dreaming of the birth, Deciding on a date...

May 18th, 2014

In early September, I invested a small fortune in plastic sticks. I had, as many times before, convinced myself that there were two pink lines. I even involved an outside culprit by the name of Andrea to peek at the stick for me when Alan said there wasn't two lines. We discussed it over the Taco Bell treats she brought, and finally convinced Alan to let us go buy another test, and the next morning Alan and I were elated to find another two pink lines. I was 4 days early in testing, but already had two positives. Because the next day was Friday and I didn't want to wait all weekend, I was able to get the pregnancy test at the doctor's that afternoon, and in slight shock, was told it was positive. I was handed the green "Congrats, You're Preggers" packet of info, scheduled out all of our appointments, and went home to tell Alan. And there was much rejoicing.

One of the first things Alan asked was when is the due date, as did most of our family. May 18th. I was elated for a May baby. My other two kiddos are fall and Christmastime babes, so I was thrilled at the thought of a new bundle to cuddle as the spring blossomed around us and summer would begin. I envisioned playtime outside, watching in my mind as the kids ran through the sprinkler and I pictured myself sitting on the swing rocking a sweet new bundle of life, under the soft shade of the trees, protecting precious new skin from the sun, yet enough to feel its warmth. Because we knew it'd be a C-Section again, and those are usually scheduled week 39, we were secretly planning and hoping for a May 12th baby, my mother's birthday. But until that decision was made, we focused on May 18th.

We decided to pay and have an early ultrasound at only 8 weeks, to make sure we heard a strong heartbeat before heading home to Iowa the following week. We heard it. We didn't see it, but we heard it there. Our sonotech said the baby measured a few days off, but not enough to changed dates. We took our ultrasound pics with us of a tiny little bean and headed to Iowa to celebrate with family, and get nauseous along the way. And there was much rejoicing! Oh how we loved this little one and were so excited to meet her in the spring!

It was also around this time that we found out other friends were due around the same dates as us. I joked with them about the possibility of being roomed next to each other, and the chaos and grief we'd give the nurses. Still other friends were due throughout May, and in my mind, I envisioned playdates with our newborns and littles come June. The idea of spring and new babies was making me so incredibly excited to be a mommy again.

Our next ultrasound would be in December, as we anticipated learning if it was a boy or a girl. We're the type that wants to know, begs to know!! The night before our 20 week ultrasound I had a rough night sleeping, and was tossing and turning. I was so excited to find out if it was a boy or girl, that I dreamed about two colors. All night long I saw those two colors while I slept. I woke a few times and tried not to think about it, but the next morning, nerves trumped excited. The two colors I'd dreamed of all night were pink and black. Not pink and blue. I knew something wasn't right. At our appointment, that we barely made it to in time thanks to unpredicted snow, the sonotech questioned dates again. We were pretty certain, until she said we were measuring more around 17 weeks than 19 or 20 weeks. That'd put us at due date of May 22nd or 29th.

{Our 2013 Christmas card that was printed, ordered, stuffed in envelopes, labeled with the names of friends and family,  never got sent, announcing our baby, coming May 2014}

Another appointment in Topeka a month later resulted in measurements that were more around a due date of June, but there was no way this could be scientifically possible, which led us to the diagnosis of the growth restriction. My dates weren't off, my baby was. She was small. Measuring so far behind. We prayed and prayed for growth. Somewhere near the end of February I ended up asking my doctor what our due date even was because we'd had 4 or 5 by that point, and I was losing track of what the actual goal date was {by now we had the Mosaic Trisomy 22 diagnosis}. I was just at the end of 2nd trimester and made the comment that this was the semester of eternity-that back at 20 weeks, we were told 19 or 17, then were told 20 instead of 22 or 24, and that it felt like this trimester would never end. There was some comical discussion about the gestation time of elephants, and well, thus Chloe's love of elephants began. I'd picked out flowers for her on her taggies and blanket-something to go with her name that means bloom, but alas, the Lord had elephants in mind for her ;).

It was decided. May 18th. Original due date. We had a day. We had a calendar day to mark up with her name and a heart around it. We would plan on that date, even knowing it'd be a bit earlier due to c-section, but we focused on that date. It was our goal. Get this baby here and in our arms. After all we'd been through, we finally had a date to plan on welcoming our baby girl to the world. And there was much rejoicing.

But that was our story. God had other plans.
Monday, May 12, 2014

Update 5/12/20

My (Alan) goal is to try to do these updates about once a week to let you know where we are.  My prayer is that most of the updates will be short like this update.  That's one of the things we've learned from rounds with the doctors.  Short updates are much easier than long updates.  Long updates mean that things have changed with Chloe.

Chloe's life this week has revolved around weaning her from the IV fluids and transferring her over to straight formula feedings for her to get her nutrients from.  The other goal is for her to start a steady weight gain of 20 grams (about an ounce) a day.  The milestone for her will be to move out of her box and into a crib.  Also, there was some discussion about removing the PICC line if she gets to all formula for her nutrients.

Feeding Chloe has been a delicate dance of amounts and length of feeding.  Too much, too quickly and she spits up.  We finally settled as of last night on about 20 mL of formula fed to her over 2 hours starting every 3 hours (6:00, 9:00, 12:00, etc.).  This has meant that for week 2, Chloe has fluctuated in her weight a bit.  Last night was the first night that she showed the 20 grams of weight gain that they want to see every day.  Please pray that she would continue to feed without spitting up at the end, that she would begin her consistent weight gain of an ounce a day.

To get out of her box, Chloe needs to maintain her body temperature on her own, and have 5 days straight of weight gain.  On Friday, they had rolled the crib out, ready to move her over, when she started spitting up on feedings and losing weight, so the crib rolled back away.   Today was her second straight day of gaining weight (yesterday, she gained a couple of grams, which is technically weight gain), so if she continues to gain, they will move her to a crib on Wednesday or Thursday.

Several days ago, they tried to take her canula out, and put her on room air exclusively, but the CO2 levels in her blood began to rise again, so they put the canula back in.  Yesterday, they took the canula out again, and Chloe's CO2 levels were exactly where they want them to be today, so one less wire for the little girl!!!!  Thank you all so much for praying for this.  Pray that this would stay stable.

Her kidney continues to slowly improve its function, which is also a praise, so pray that her kidney would continue to pick up function and grow and improve.  Her heart is really unchanged from last week.  The PDA still hasn't closed, and so her blood continues to be a good mix.  The PDA should close this week, and so this will be when we see if she will need an early heart surgery.  Pray that her balance between blood to the lungs and blood to the rest of the body would continue to be right.

The PT folks were by last week to try to fit Chloe with splints to begin to correct her club feet.  A frustrated hour later, they gave up.  They ended up putting a special kind of tape to begin pulling her feet into the right direction on along with some foam splints.  The supervisor for the PT folks (AKA the expert) will come by later today or tomorrow to put splints on to keep working on correcting her feet.

In other news, Isaac and Abi are with us now after a couple weeks of being with grandparents.  During the day, friends are watching them so that we can spend the day in the NICU, and then they are eating supper with us and seeing Chloe at night before bedtime in the Ronald McDonald house.  Pray that they would adjust well to this schedule and for exhausted mommy and daddy, that God would give us patience with our energy filled kids!

So to wrap up, please pray that Chloe would stop spitting up, that she would begin to consistently gain weight.  Pray that she would graduate to a crib this week.  Pray that they would be able to remove the PICC line so that she would only be down to the feeding tube and monitor cords.  Pray that the PT specialist would be able to fit her with splints to correct her feet.  Pray that her heart would continue to balance the blood to her lungs and to her body.  Pray for our little family, as we adjust to the new normal this week.
Saturday, May 10, 2014

Mother's Day in the NICU

Before I begin, please know, I am blessed to have an amazing mother. She loves me, spoils me, encourages me,...the list goes on. I cannot thank you enough for choosing life and choosing to love me unconditionally. For that I am truly grateful and blessed. 

I'm sure many and most of you out there reading this have amazing mothers who you love, adore, and that you are thankful for, and it's good to take the time to say thank you for loving me to your mother and honor her. That part, I whole-heartedly agree with.  

But I don't agree with the commercialization and pressure of Mother's Day. I totally just googled "Mother's Day created??," and learned that the creator of Mother's Day wished it only to be a simple holiday where you could write your beloved mother a letter and thank her. I find it ironic that the link said the creator of Mother's Day wanted to honor her mother, who was a peace activist among other things, and yet the creator herself, when she saw Hallmark {...ironically at the moment just steps away from our living space here...} and other companies making profit off the holiday and commercializing it, went so far as to even get arrested for disturbing the peace at a Mother's Day related event.

I'm struggling this year with Mother's Day. I don't exactly know how to feel about it. Society has put this spin on Mother's Day that you must find Mom the perfect gift or card, that something has to be done to celebrate Mom that one day each year. And it's not just pressure on the husbands or fathers, it's pressure on the moms  themselves out there. Pressure to sort of reassess how they're doing as a mother-comparing themselves to other moms, comparing themselves to their own moms, pressure to be successful as mothers...

In 2008 we lost our first baby to miscarriage. By May of the following year, we were pregnant again. But there was a heavy and dark void that Mother's Day. It would have been my first Mother's Day as a Mama, granted our little one would have still been growing within, but I would still have been a mama. I was thankful for the flowers my hubby sent while I was home in Iowa, and signed them "Love Iggy" (our nickname for our unborn son at the time). I still have the little card that came with the flowers. I was excited and elated to be a mom. But I was also grieving the loss of our first child, the child that would have been due the following month. 

My heart aches and grieves with the mamas who...

...aren't yet mamas due to infertility...
...who have lost child after child to miscarraige....
...who have battled some type of cancer or another and told they cannot have children...
...who are single, but long for marriage and family...
...who have grieved the loss of a child...
...who have fostered little ones and loved them as their own if even for a short time...
...who have adopted a child, but feel there's no adequate way to truly honor the birth mother...
...who have loved their child enough to give them up for adoption...
...who have lost their mother...

And this year, a new one hits way too close to home, because it is home these days.

The NICU. 

I've known for a while now my calling to be a mama. I love cleaning up spilled juice, making mac n cheese for the 4th time in a week, reading Winnie the Pooh, picking food out of my daughter's hair, cleaning my son's puppy at midnight so he can sleep with it, raising them to know of the love of the Lord until they claim Him as their own... But never, never did I think I'd be a NICU mom. A preemie mom. A mother of a child with extremely rare chromosome conditions. 

I think the reason I'm especially struggling with Mother's Day this year is because I don't fully feel like a mom. With all the wires and cords, I can barely change Chloe's diaper. Due to the length of her feedings and not wanting her belly to get upset and spit up too much, I can barely hold her without just the right timing these days. I have yet to put clothes on her, and she's 2 weeks old. She hasn't even spit up on me yet. It might sound weird, but I WANT her to spit up on me. I WANT something normal from this, even if it's the smell of spit up, something most moms would complain about. And as if I feel bad enough that I can't fully mother her, I feel just as bad or worse that I can't fully be there for my other two kiddos. It's a delicate balance and dance of trying to love each child with what little energy I have left. It breaks my heart to know I do not have much else left to give them most days. 

What's the point of this rant? To boycott Mother's Day? No. Like I said in the beginning, I think it's good to show gratitude and honor our Mothers. But I would urge you to have gentleness in your heart for others on Mother's Day. It can be a really tough and draining day for many. 

Please love on those who are struggling today. Give them grace during this day. 

Thursday, May 8, 2014

A Day In The Life: NICU...and COWS

Odd schedule today since RMcD House is serving lunch (usually we just eat lunch at the hospital and bop over here for dinner), so we have a little bit of time on our hands (not really...laundry, emailing, updating...) before it's ready, so I thought I'd take the time to give a brief overview of what a day in the life of a NICU parent(s) is like {some of you have asked what a typical day looks like around here, so here we go...includes examples of sleep deprivation moments...}

**I'd like to preface and say this schedule is a typical really GOOD day. This is not how a not so good day goes, where you might have an unexpected test, alarms on monitors, doctors popping in and out to assess her outside of normal times, round-table meeting with 9+ doctors and nurses all discussing worst case scenarios, having to consider decisions that will need to be made...those days are not this laid out and processed. On those days, there is a lot of praying, crying, and just getting through. We're lucky on those days if we remember to eat. But we are having a good day, so let's go down that road...

7am ~ Alarm. We wake up exhausted. Oxymoron, I know. One should feel refreshed after 8 hours of sleep. But we have adrenaline to get up and moving so we can have some time with her before the doctors make their rounds and do assessments. 

8:30ish ~ Eat a breakfast bar on the way to the hospital. Remember to take motrin. Accidentally almost take Percocet. Remind self to throw remaining Percocet away so that I don't accidentally mistake it for my motrin.

8:32am ~ Attempt to remember what level we parked on. Consider taking the little "you parked here" card. Use hand sanitizer while waiting in elevator. Listen to Alan sing "We all park in a yellow submarine..." to remind us that we parked on Level 2 Yellow Submarine. 

8:38am ~ By her bedside. Get night report from nurse. Wash hands. Ooh and ahh over her accomplishments from the night before :). Sigh heavily if a not so great night (but so far, so good!) Perhaps take pic of her. Wash hands because we realized we just touched our phones. Attempt to steal extra rocking chair if available, otherwise we get one rocking chair, and one nurse's office chair. Paper-rock-scissors to see who gets what chair. Watch nurses stare at us as we do so. Not really. Haven't had to play PRS just yet, but getting to the point where we've decided one day, when our cruise ship comes in, we'll donate nice rocking chairs to NICU nurseries. 

8:54am ~ Drink 3oz of horrible coffee. Decide it's not worth it. Return to bedside. Wash hands. 

9am ~ 10am ish ~ Help change diaper if needed. Rock her. Attempt to update prior night's report in a quickly wrapped up update on fb or to family. Wash hands, again. Consider coffee. Remember how bad it was. Forget about coffee. Google new medical terms the nurses are using today as to appear like we really know what they're talking about (for now we nod and smile in agreement). Read scripture for the day. One dear friend texts me daily scripture. Love her for this ;). Another person asks how Chloe is today. Text back update and include our scripture for the day we're clinging to. 

Sometime around 10am ~ 10:30am ~ Doctor rounds. This consists of neonatologist, neonatologist fellow, nurse practitioner, sometimes cardiologist, and a few more peeps, plus Chloe's day nurse. They assess her, go over all her numbers and how she's doing, then allow us a moment to ask any questions. 

COWS...this leads to a fun and interesting topic ;). They "drive" these computers around...
But since it's a children's hospital, they're decked out like tigers, zebras, cows, and the list goes on. They are called COWS (Computer On Wheels), but what's funny is there is one dying cow that our team of doctors somehow seems to always draw the short straw and ends up with the dying cow from the corral (seriously, where they keep them all, they call it the corral). They've begun to ask Alan {almost resident IT guy} why it sounds this way. Today's nurse practitioner commented it's nearly time to take this particular COW out to the back pasture.... {Thanks, Google, for the image. When I googled Computer On Wheels, a ton of computer images came up, and also one real cow out in the pasture ;) }

Noonish ~ Notice time runs on 'ish' as in, nothing is the same time daily. Depends on if she's having a test done, or a doctor will be by soon. Lunch is usually either at the cafeteria, Ronald McDonald Room which is like a hospitality room at the hospital, or at one of the 2 RMcD houses. Thankful for the friends that have taken us out to lunch or dinner once in a while.

1:30 ~ 3pm...attempt naps back at RMcD house. Attempt that is. Sometimes laundry. Sometimes phone chat or skype with the kiddos. Sometimes blog update. Sometimes sleep. Sometimes you're so exhausted that sleep still doesn't come. Check emails. Decide to head back over. Touch doors. Touch car. Touch elevator. Use hand sanitizer. Check texts. Realize scripture I sent to someone earlier is NOT the right verse, and that Old Testament reference to tents and ropes have nothing to do with our situation. Facepalm. Text back intended verse. 

4pm ish ~ Back to Chloe. Attempt 2 more oz of coffee before realizing there's more to live for in life than horrible coffee. Wash hands. Go back and rock and watch monitors. 

6pm ~ Dinner...somewhere. At some point. Sometimes we just skip and stay with her and do a later dinner. 

7pm ~ 9pm Wash hands. Cuddle. Major cuddling action usually around this time. Each night around 8pm is bedtime routine. We get to change her diaper, help weigh her, change out bedding, help check wires, swab out her mouth. Best nights are bath nights (every other night) bedtime routines because it's the most hands-on time we get. Makes me feel more like a mama when I get to actually help do stuff and not just watch the nurses interact with her. Give nurses are hard time. Listen in as nurses change off shifts from 7-8pm (parents allowed to stay during this hour, but visitors may no due to the medical information being exchanged). Check texts. Realize yet again I texted the wrong verse, but at least this time the verse was more fitting and not completely out in left field. Respond with originally intended verse. 

9pm Options: 1) More rocking/cuddle time. 2) Tucker her in and say bedtime prayers then head back to house. 3) Decide on cuddle time, get all comfy with pillows in the chair and rock her for 15min before my eyes are closing. Realize I'm too tired to stay awake and rock her, and it's kind of a dumb idea to fall asleep holding a preemie with 6+ wires....ask nurse to put her back. Sigh because I really wanted to rock and cuddle more, but realize I need sleep just as much. Say good night. 

9:46pm ~ Exit elevator. Use hand sanitizer. Wander aimlessly around Red Rocket parking level. Realize we're on Purple Plane. Head back to elevator. Use hand sanitizer again. Finally find vehicle. Promise ourselves we will start taking the "you are parked here" ticket. 

10pm ~ House. Wash hands out of habit. Check a few emails or respond to texts. Consider emailing Starbucks and asking if they'd like to partner with RMcD houses. Pray. Lights out by 10:30 or 11pm. Sigh. Realize He got us through one more day...

Wednesday, May 7, 2014

Update from Monday

Many of you have been asking about Monday's meeting, and so now that the kids are back with grandparents, I (Alan) suppose I should update.

It's a little hard to update from the meeting, so I'll kind of describe the format and be a bit vague on the details if that is okay.  The meeting was about 10 minutes of describing Chloe's current condition and path forward if she continues to be stable (which is really the best case scenario at this point).  The rest of the 2 or so hours was a discussion of what if scenarios.  Obviously some of these what if scenarios were much harder to hear than the others.

Let me start with her current condition.  At this point, they have determined that there is one kidney in the wrong place sitting on top of her bladder.  That said, the one kidney is functioning and picking up in function as she goes.  This is a good sign and is encouraging for the future.  That said, it is also entirely possible that there is another kidney somewhere else (after all, this one is in the wrong place).  At this point, the doctors don't really want to subject Chloe to any more tests, and the nephrologists and cardiologists are cautiously optimistic proceeding with future surgeries with one kidney.  The neonatologist did say that if at any point they need to perform another MRI, she will have them scan the whole body so that we can get a full picture.

Her heart is balancing well on its own, which is a wonderful thing.  There's a delicate balance between too much blood to the lungs and not enough to the body, or visa versa.  If there is too much blood to the lungs, they will need to perform a restricting surgery, called a pulminary artery band.  If there is not enough blood to the lungs, she will need a BT shunt.  Of the two, the pulminary artery banding is a less major of a surgery, but our prayer is that her blood would continue to be balanced.  The goal is to get her to 6 months, when they will perform the first of two necessary surgeries, the Glenn procedure.

To perform the Glenn procedure, her kidney needs to be strong enough to withstand heart surgery.  Also, her airway would need to be intubated (ventilated) to perform any surgery, and with her differences-the way her neck is formed, that procedure in itself would be extremely high risk.  They would likely need to use fiber optics any time they would need to intubate her. Please be in prayer that if emergency intubation would be needed, that it would be successful as we've been told there's a chance it would not work based on how she's formed.

The major focus of this meeting was a discussion of kidney and heart and the interaction between the two.  The what if scenarios were frankly exhausting to hear, and I won't go through them all.

Chloe's other differences were quite a bit less discussion, as each of them will require intervention in the future, but are not life limiting differences.  Not remembering what I've talked about and not talked about, I'll try to just walk through them one by one so I don't miss anything.

Chloe has two club feet.  One of her feet can be corrected with physical therapy, and so the PT folks are visiting her once every two weeks to work on range of motion.  The other foot will need a cast at some point in the next month or so (preferably after she's grown).

Chloe failed her initial hearing test, but this isn't a final test, and many babies fail their initial hearing test.

Chloe has differences in each of her eyes.  Her left eye has a smaller optic nerve.  We're not really sure what this will mean for Chloe, and the opthamologists were not at the meeting Monday.  Her right eye has more differences, somewhat akin to a severe cataract.  She will need surgery at some point to correct this difference.

Chloe has both a cleft lip and a cleft palette.  Typically they would perform a surgery at 6 months to fix the lip, and then another 2 after a year to fix the palette.  The Glenn heart surgery will trump this surgery, so the clefting schedule will all get pushed back a bit.  Because of this clefting, before Chloe can go home, she will need surgery to put in a G-tube to feed her.

If you were counting, you'll note that in the best case scenario, Chloe has a lot of surgeries in her first year, and the bigger she is, the better for each and every one of those surgeries.  This means that our first and biggest prayer concern is that she would grow.  To get there, her upcoming milestones will be to get off of the oxygen cannula (they took out the cannula today, so pray that her CO2 levels would be normal tomorrow morning so that she can stay off of it).  Then, they will take her out of her "box" and put her in a crib when she proves she can regulate her body temperature on her own (the purpose of the box is to regulate her temperature).  Her weight will fluctuate for one more week as her kidney gets used to its function, and as they increase her feedings (in the past 2 days, they have more than doubled the amount she gets with each feeding), and then starting the 12th, they will want her to gain 20-30 grams (a little less than an ounce) each day.  To put the feeding tube in, they want her to be 6 or 7 pounds (or even a little more).   This means that our timetable revolves around her weight gain and continued stability.

I asked the dreaded question in the meeting about how long the doctor thought she might be in the NICU before she can go home.  Putting up all kinds of reminders about setbacks and things that can change the schedule, the doctor thought we might be thinking about going home in the latter part of June.  That said, do you all remember when the plan was to have Chloe on Monday, the 28th....?

I have said through this that apparently God is really focused on teaching us that we really are not in control of this (or any) situation, and so we're trying to not form expectations at this point, but simply trust God for the timing.  He has not been shocked by anything thus far.  When we were told in December that our baby had major deformities, and would die any day, God knew that we would be sitting here in the NICU holding her in May.  When the doctor told us in February that we weren't going to even talk about delivery because the likelihood was so high that she would be stillborn, the Lord knew that she would be delivered safely at 3:08 p.m. on April 25th.

Jodie and I both have been doing a lot of meditating on Psalm 139 over these days, and I am particularly struck by verses 13-16, "For you formed my inward parts (the Hebrew word for kidneys); you knitted me together in my mother's womb.  I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well.  My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.  Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them."

Over the last couple of days, we had our oldest two, Isaac and Abi here with us to meet "Baby Chloe."  What amazing ways God has blessed us.  What a blessing you all have been.  We continue to be told by people that we have never met before that they are praying for us and for our little one.  Some might think that you all are strangers, but each one of you are family, brothers and sisters together in the Body of Christ, and for that we are blessed beyond words.

Sunday, May 4, 2014

5-4 Update

It has been a week or so since I (Alan) last typed an update.  Feels like forever has passed in a week, and frankly, the days have kind of blurred together.  I will apologize now if I repeat myself.

This was very much a week of diagnostics, trying to get a handle on Chloe's differences, and how best to care for her.  We began the week with Chloe having some redness around the area where her cord iv was placed (in her belly button), so there was a need to put in a PICC line.  A PICC line is a line that goes from her leg, up all the way to her heart to administer meds and take blood draws.  A line nurse made two attempts on Saturday.  Chloe got quite agitated from this, and so she had to give up and let her rest.  At this point, since she had been born, her breathing had been really fast, and the line attempt only agitated her further.  They decided to go ahead an put her on antibiotics to stave off infection at the belly button and try another PICC line on Sunday.

There was probably some echo cardiograms and sonograms, I think maybe of her kidneys and cranium at some point?   Again, days blurry....  On Sunday, a different line nurse tried another PICC line twice, and failed both times.  Each of these times was about an hour or so, and very hard on Chloe.  Because it was so hard on her, they decided that the next attempt would be by IR (Interventional Radiology).  This time they would try to place the line higher up on her leg and tunnel the access port down lower.  This attempt would have the benefit of very expensive machinery to see the blood vessels and the line to try to get it in.  The nurse and I got her ready to go and took her down.  We walked into a VERY expensive looking room and I signed the consent form for them to work on her and then headed back up to wait.  She got very cold from laying on the table under the machine, and it took her a while to warm back up when we got her upstairs.  We let her rest, knowing that the next day (Tuesday) would bring another time on a table to get her MRI.

At some point in the midst of this, we began to have discussions about her kidneys.  The nephrology team had difficulties getting a good picture of her kidneys.  The left was was indistinct and looked really small, and the right on was in the wrong place right over her bladder.  This is of particular concern since she needs kidneys that function well to have heart surgery (for sure she'll need surgery at 6 months).  They also had seen some air in her abdomen after the first feeding they tried, so there was concern that she might have some intestinal issues, so they ceased feeding her formula, and put her on strictly IV fluids.  The plan was to have a contrast done on her GI tract later in the week.

On Tuesday, we packed her up once again and took her down for the MRI.  Once again, she got very agitated and very cold.  She was pretty distressed for the rest of the night, and had a couple of "episodes" where she stopped breathing and had to be nudged to remind her.  This was quite concerning and began long, difficult discussions about ventilating her and what situations to do that in.  They also started her on some oxygen through a canulus (sp?) as the CO2 in her blood was creeping up.

Wednesday brought another test where we needed to pack her up and send her down to another very expensive looking room.  (Thank you church for the excellent health care you provide us, we're definitely using it this year!)  This time, the nurse was all over trying to keep her warm, with warm blankets, a heated pack (for lack of a better term) to put under her when she could, and last, she told the radiology room to crank the heat up to 80 degrees.  This test involved injecting contrast in through a catheter and seeing if any of the contrast refluxed back into the kidneys.  We were able to stay in the room this time, and so we stood, decked out in lead jackets and thyroid covers while the team reminded each other that if anyone started to feel lightheaded, to sit down.  It was a sauna in there!  So blessed that they went though that discomfort to try and keep her warm..  Mission success, her temp had not dropped at all when we got back up, and she was much less agitated.

She had more episodes through the night, and started freaking us out a bit.  Probably our lowest day was Wednesday with her just looking like she was getting worse.  The doctor decided that she really needed to know what those kidneys looked like, so that she would know if she could tolerate early surgery if needed.  She very reluctantly thought about having a CT scan.  We had really hard conversations where we cried and she (the doctor) cried, and it was a real bummer of a day.

The doctor called later that day and decided that she didn't want to subject Chloe to that much radiation (apparently a CT scan is a lot), and so she contacted the nephrology team and told them they needed to do another ultrasound to get a better look at her kidneys.

Thursday was very much a wait and see day.  On the good side, it was also a day of rest for Chloe.  Really this was the first day that she didn't have someone poking and prodding at her and putting her on a cold table to do a test of some kind.  The doctor dropped by our pod and said that after further discussions with the GI surgery team, she wasn't as concerned about intestinal issues as she thought they were, and the air pocket had disappeared, so it looked like maybe it was something that was just a newborn thing.  Chloe's blood tests were starting to look better, and the episodes were decreasing, so the doctor decided to push Chloe a bit and start her on feedings.

On Friday, the CV surgery team met with our doctor and decided that they would have to wait and see what her kidneys did to evaluate her for surgery later.  Nephrology wasn't able to find a kidney on her right side after another ultrasound, but did say that the kidney over the bladder looked good, and was functioning adequately, and improving in its function with each day.  At some point, our doctor wants a full body MRI to check and see if there is another kidney somewhere, but we are encouraged that the nephrology team seems to think that as Chloe grows, this one kidney looks like it might compensate to the point where surgery is possible.

The MRI looks like Chloe has some differences that will probably mean some learning differences, but there are no gaps or absences that would mean functional issues (like the brain lacking the part to tell her how to breathe).  She did fail her first hearing test, but so did every one of the mosaic trisomy 22 babies that we know on Facebook.  They all are able to hear (some with hearing aids to help).  She also had some differences with her eyes, and we'll have to see what that means as we go.  She did start physical therapy for one of her club feet, and at some point they will likely do some casting on her other foot to correct.  The cleft lip and palette are typically fixed at 6 months and a year, so they kind of dropped by to say they'd see us quite a bit later.

As Chloe had non testing days, and began to feed regularly, she really began to perk up.  She's had a couple of nights without any episodes, and she seems to be handling the feedings well.  We've been able to do cuddle times (Jodie is rocking Chloe as I type), and she just seems to be doing a little better each day.

We have our combined consultation on Monday, where they put all of the doctors and specialists in a room with us to try to chart a course for Chloe.  This is frankly more than a little intimidating and scary.  You can pray for us that we would continue to chart a positive course for Chloe and that we wouldn't feel hammered in this meeting.  After all of the bad days we had initially, the good days we have had make us a little nervous for the roller coaster to head back down (we've been on a roller coaster since December), so please pray that we would trust God fully as we navigate the NICU waters.

We have gotten to know lots of nurses here, and they have really loved on Chloe.  Several times we have come in to "craft time" from the night before where the nurses have put up decorations for Chloe.  We have been really blessed by our neonatologist as she has worked with us, and are a little sad that her two week rotation is ending on Monday, and we'll be with a different doctor.

So, prayer requests!  Please pray for Chloe, that she would grow.  Any discussion about heading home will revolve around her size being 7 or 8 pounds, which is a long way away frankly.  One of her MT22 buddies who was born the same size as her took 3 weeks just to get to 4 pounds.  Also, pray for her kidney that we know about, that it would grow in size and function and that it would be a "horseshoe" kidney.  I don't know what that means, but God does!  Also, I'm praying that they would find a second kidney somewhere, as that would be a great positive for her with surgeries in the months ahead.  Pray that her pulminary valve would shrink a bit, but not too much so they wouldn't have to do a banding surgery on her to limit the blood flow to her lungs.  Pray that she would continue to tolerate the feedings well, and that she would grow!

Pray that we would have peace through this process, that we would be the light of Christ in a very stressed and worried world (the NICU is a very tense and stressful place).  Pray that we would continue to get rest, and that Jodie would recover quickly from her C-Section.

We have been blessed by so many of you, and we continue to be amazed how many people have been praying for us and loving on us from near and far.  Thank you so much for your love.