Friday, June 20, 2014

A Brief Recap

This post is a transcription of Jodie's handwritten reflections about the last week, dated 6-19-14.

I've been wanting to recap the emotions from the last week, but have not had time to sit at the computer.  And I'm still not sure how to sum up the events of this last week, sin instead, here's a slight recap...

In the last week I have...

-Said goodbye to my son and daughter on the spur of the moment for an undetermined amount of time.

-Heard the words "The parents are on their way," "They wouldn't let me back till you guys got here," "The parents are here," etc.

-Watched from afar as 12+ doctors and nurses work on your baby, and shoot you worried sideglances.

-Felt like your knees were going to give out from the weight of it all.

-Been on automode, sleeping only when pure exhaustion consumes us.

-Endured letting a new friend do our laundry, including underwear, cause she's amazing like that.

-Prayed more times than I can count.

-Learned the verbage surrounding ventilators.

-Endured knowing my son was sick with the flu, the sickest he's ever been in his life, and knowing I couldn't be with him to comfort him...and knowing he wanted us to be there.

-Listening to my husband cough all night and being scared about his asthma. Taking him to the ER.

-Experiencing an extubation attempt, and seeing my sweet daughter turn ghostly white in my hands.

-Receiving texts from my husband saying things like blood tests, CT scans, IV started, all while watching the ENT, RT, and nurses re-intubate my daughter.

-Enduring not being able to hold my sweet baby.  Not cuddle my sweet toddler girl, not hold my son's hand while he was sick.  Not have my husband by my side during extubation/intubation.

-Felt immense love from my friends who have done our laundry, cleaned our room, watched our kids, cared for our kids, loved our kids, sat and cried with us, sat and laughed with us, sat in silence with us, prayed for us, prayed over Chloe, sat with us during surgery, brought us food, baked for us, cleaned our child's puke, stepped in our child's poop, organized childcare for us.

-Signed a consent for surgery, which included such risks as possible cardiac arrest.

-If I have any strength left, any ground to stand on, any peace to close my eyes and finally sleep, it is this...

"You have been my refuge, a strong tower against the enemy." Ps 61:3

"He alone is my rock and my salvation, my fortress; I shall not be greatly shaken." Ps 62:2

"Trust in Him at all times.." Ps 62:8

"Our soul waits for the Lord; He is our help and our shield.  For our heart is glad in Him; because we trust in His holy name.  Let your steadfast love, O Lord, be upon us, even as we hope in You." Ps 33:20-22

"But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases, His mercies never come to an end; they are new every morning; great is your faithfulness." Lam 3:21-23

Saturday, June 14, 2014

Target Meltdowns, a zoo rant, and the scariest night yet....

If you didn't know, life in the NICU is random and chaotic and all according to God's plan, not ours.  Our day started out as normal as normal can be here in KC.  We got up, dropped the kids off at the morning NICU play group and settled in.  I (Alan) finally got to hold Chloe again after 4 weeks of barely seeing her and being pretty hands off until we got my cough figured out.  She was super peaceful, and snuggle time was just the best.  After lunch, we had some family come in and visit in the afternoon, and as the kids were crashing out in the waiting room, we decided to make a Target run to pick up some things and get away for a little bit.

The kids fell asleep on the way to Target (first sign of the disaster that was to come), and a nice quiet ride in the van ensued.  Once we got there, the kids woke up, and we got them out of the car and strapped into one of those over-sized kid cart monstrosities.  Or not.  Isaac freaked out, and didn't want to sit in the cart thingy.  Okay, hold Isaac it is.  Perhaps a in store snack is in order.  While Jodie went to get the snack, I took Isaac to the bathroom.  We came back, and Abi had her red Icee, and Jodie was just finishing pouring Isaac's blue Icee.  Can you guess what's coming next? "I WANT A RED ICEE"  So, Jodie pours out half of Isaac's blue Icee and fills it back up with red Icee.  "BUT I WANT BLUE!!!"  Um, no, not going there in the Target store.  I give him a chance to drink the Icee he has, but to no avail, so out of the store I walk with a screaming (seriously, the lungs on that kid) 4 year old.  I proceed to sit in the car for the next 15 minutes with Mr. Tantrum while Jodie continues the errand in the store.

I wasn't there, so I can't really attest to this fact, but apparently, Abi wasn't doing all that much better in the store, and somewhere in the middle of her meltdown, while judgmental people were looking judgingly at our parenting disaster, Jodie snapped at a lady that this was NICU life.  (I'm sure Jodie can tell this story better, especially since I wasn't there)

At almost the exact moment that I had calmed Isaac down, we had worked through repentance and forgiveness, and decided to head back into the store, Jodie opened the van door with Abi and related her experience in the store.  Exhausted, frustrated and a full cranky family later, we decided to text a friend and ask if we could come and sit in her fenced in back yard where the kids could run and we could not really pay all that much attention to them.  Thankfully, the friend said yes.

For 6 weeks now, I have been saying that the one thing that I want to do with the kids while we're here is take them over to the KC zoo, so right before we stopped and got some Papa Murphy's cookie dough, I launched into a 5 minute rant about the fact that by golly we were going to the zoo Saturday, I didn't care how much it cost.  We were going to see the animals, we were going to ride the train, and by golly we were going to have fun.

We then stopped for Papa Murphy's cookie dough, because it had just been that kind of a night.  We stopped at the friends house, played for a couple of hours and headed back.  Just as we started back, Jodie got a call from the hospital that Chloe had coded (her heart had stopped beating), they had to begin chest compressions and they were attempting to intubate her.

Needless to say, the trip back on I-35 was quick and we hustled to get back to the hospital.  A dear friend we met at church here in KC left a wedding reception she and her husband were at to go to the hospital while her husband headed to the Ronald McDonald house to sit with the kids until our more permanent childcare arrived from Olathe.  We dropped the kids off at the house and bee-lined it over to the hospital.  When we got in, there were 15 nurses and doctors gathered around Chloe working on her trying to get her intubated (put on a ventilator).  Because of her genetics, her airway was not cooperating, and they couldn't get a tube down to get her intubated.  To take care of her temporarily, they put an LMA in.

As they started to look at x-rays, it looks like what happened is that she spit up tonight, and sucked some of it back into her lungs, which began the spiral with her airway and heart.

Shortly after we arrived, they had her stabilized with the LMA, but wanted to get a secure airway in for through the night and the next couple of days as they evaluate her lungs and blood to hunt down the cause of this episode.  We stood with her, and tried to keep her calm (essentially the LMA was like a big balloon in her throat, and she was not happy about it) until the ENT (Ear, Nose and Throat) folks could come up and take a look.

They came up and decided to try and put a tube in using the LMA as a guide (she even brought up a set of tubes to practice with).  They brought up the fiber optic equipment to help with the procedure and then began.  If they were unable to put the tube down this way, then Chloe would have to go to surgery to have a tube put in through her throat.  After what seemed like an eternity, they said that the tube was in.  Her sats (blood oxygen saturation levels) continued to be really low, so they brought over the x-ray machine to take a look at the placement of the tube.

The tube ended up being too far down, and was into her right lung, so they pulled it back, her sats finally came up to where they wanted them, and she finally began calming down (even after several meds to calm her down, she was fighting like crazy).

Now if only I could calm down, we'd all be good.  Jodie finally went to lay down in one of the rooms they have here in the NICU for parents that need to stay the night.  Pray for our little girl, that she would get over whatever is causing this issue, so they can take this tube out and get her back on room air, feeding and growing.  They aren't feeding her right now (and won't probably feed her for a couple of days), but they have her on IV fluids.  Pray for Jodie and I, as this was by far the scariest time for us yet (no comparison even to the birth).  Pray for the kids, who are now with friends for the weekend.   The first part of the story should clue you in to how out of sorts they are with all of the changes and irregularities in our schedules.  Pray that God would give us wisdom how to parent well through these days.  Pray most of all that our little girl would GROW, and get off of this ventilator as soon as possible.

Pray we'd get over to the zoo some day...
Friday, June 6, 2014

Special Needs?

The kiddos get back from Iowa today. That means our sanity flies out the window today, at approximately 6:03pm. That means if I want to blog, now's my only chance.

I've been thinking a lot this week on the term "special needs" and what that means to me.

Back in the spring, when we finally, two amnios later, got the results of the Mosaic Trisomy 22, just after our doctor told us the results, he then began to describe some of the physical features Chloe would have when she would be born. He described the bridge of her nose being flatter and wider set eyes. Lower set ears. That her trisomy meant she'd probably be shorter. We laughed...Alan is 6'4", so there's a chance that "short" in our family will really mean something more like 5'5". We knew there was a chance of her being special needs in other areas. But what did all this mean?

I've never really been around any special needs kiddos. My brother and I are perfectly healthy and normal {well...jury is still out on just how normal I am ;)}. Alan and his brother just as healthy and normal...ish. All our cousins are healthy and, there's that word again-"normal". So what would not normal look like? During one of our prenatal visits at Children's, the doctor referred to Chloe as abnormal, then corrected herself and said, "We don't like to use the word abnormal, so we'll say different. These are Chloe's differences in her heart compared to other babies." I was thankful she was respectful to Chloe being "different" but having to stop to re-word it made it even more awkward. We get it, she's not right. Something is very not right with all of this. But how would we embrace this?

Since she's been here with us, six weeks old today!, we've embraced her. We've loved her even when it hurt. We've loved her to the point of no sleep. We've loved her to tears. We've loved her for who she is, because she's our Chloe. That's all we see in our eyes. It's not an issue of "normal" or "not normal". It's just Chloe; this is who she is, this is her.

I had a chat recently with a new sweet friend about defining the term "special needs". There's a stigma that some put on special needs. I've believed that stigma. I've tried already to protect Chloe from being labeled by society before she even has a chance to prove herself otherwise.

So I'm stuck wondering how I feel about this. On the one hand, she is definitely special needs. The paperwork alone for her social securitydisability proves it. The insurance statement we received yesterday that basically says, "Oh, yes, yep she's still in need of hospitalization," proves it.

Seeing so many kiddos, and adults, anyone really that falls under that "different" category and wondering about it makes me ponder what are we measuring "different" to? What would make me considered "normal" and someone like Chloe considered "different"? Didn't God create us all in His own image? Didn't He decide the number of hairs on our head? Wasn't it the same dude who create the stars and flung them across the sky that made the intricate threads of our fabric that creates our being? So who is to say this person is 'different' and that one is 'normal'? God doesn't make mistakes. He didn't make a mistake when Chloe's heart was forming. He didn't make a mistake when He created her club feet or cleft palate.

So I'm choosing to look at the term "special needs" and not think it's because she's different  like society has taught me to believe. I'm choosing to look at it that He made this precious, perfect little pink package and think she's right. She's normal. She's normal in terms of that's what He intended. She has health issues: yes. She is proving to do better than expected. She has hearing issues: yes. But she's still young and it could be the fluid. She has one kidney: yes. But last I checked, God's not slow and He knew that was coming too, and if He knew it was coming, then He'll go before us in it as well.

It's going to be a long road, and I can't lie, there will be some grieving and getting used to the fact that we're no longer that perfect family with two healthy children who could go out on a date on a whim with the help of a babysitter, but instead, embracing this new life He's drawing us into. This new chapter in our marriage and parenting and family. Will I stress over a simple date night now wondering who to hire to babysit the kids or can I find a willing nurse to do it? Yes. Will I worry every time I take her to Target, or HyVee, or church, or the park about germs. Yes. Will I worry about what others think of her? Hope not. Will I be prepared to answer when they inevitably ask, "What's wrong with her? Why is she different?" That's what I'm working on. And I think my answer will be, "She's not different and nothing is wrong. She's designed perfectly as God intended. In fact, He designed her so intricately that she has extra chromosomes to prove it." ;)

It'll be a journey, but learning to accept and embrace it. Can't help but think that the Lord calls a certain group of mama's to this amazing journey, and by it we are blessed. Yep, she sure is special. Yes, she has needs that will need met. She can do this. And so can we. And we're blessed and know we'll continue to be blessed with all of our amazing doctors and nurses and specialists. In the world of special needs, those working with our kiddos have thee biggest, widest, most loving hearts you'll ever find. They love on our kiddos and we love them for it.

It's not so much that our daughter will have special needs as it is the fact that she is beautifully needed. I need her to teach me about life. I need her to teach me about love. I need her to teach me about expectations, and how to exceed them ;). I need her to teach me about kindness and gentleness. I need her to teach me about not judging others. I need her to teach me patience.

God's going to use this little petite princess to teach me {and others} so much.
Wednesday, June 4, 2014

Meet Abigail: The Day Planner

Meet Abigail. Our 2 year old. She's full of spunk and fun and is a crazy little determined red head. 

She's also the inspiration behind the design of our newly launched planner, the Abigail by Diadem Planners. 

Earlier this winter, a dear friend and I were exchanging a slew of emails where we were discussing the need for the perfect planner and journal-something that would fit our lives as busy mamas and fit in our purse or diaper bag, but sadly there's a lack of planners out there that zone in on two important things:

1. Keep God first in our lives, marriages, families. 

2. Keep our families alive and thriving...meaning, my planner needs more than just a weekly to-do list and daily schedule. 

Kathryn, the mastermind behind this conversation and project, said how she jokingly told her husband she should just make her own to help fit her needs as a young mama. In a passing conversation through facebook messages, she shared this thought with me as well. I vented the need for something to keep me organized, but even more so, something that drew me to the Lord, the Creator of order from chaos. The more the conversation evolved, and the more Kathryn washed her hair {aka shower time to think on this}, the more this idea came to fruition. 

With prayer, pencil sketches sent to me {the designer} mostly at 12:35am when we both finally had a quiet house and time to think, and patience, we created the Abigail: A planner that would help even the most chaotic mama, or grandmama, or aunt, or cousin, or anyone with the pink chromosome stay in step with the Lord and with life. We also created the Elizabeth~a journal+planner in one, named after Kathryn's sweet, sweet little Lizzie. 

And it's here!!! The Abigail is here!

So exciting to see our idea come to life. Here's a sneak peek at some of the pages...

I think next to the daily quiet moments of reflection {Tell of His Greatness page}, my favorite for everyday life is the cleaning page. No joke. I'm a clean freak, but I have trouble getting too carried away with one cleaning project, and neglecting another. Love how the cleaning page helps me to write down the most important tasks of that week for cleaning, then hop to it. And if you're like me, I thrive on physically checking something off of the to-do list, thus it brings great sense of accomplishment for me to finally cross off things like "clean out fruit loops under kids bed" or to start more simply, "make bed". 

As busy moms, the hardest task is first raising our children to know the Lord, and secondly, keep them fed, bathed, to places like AWANA on time, and alive ;). This planner will help us do that, and so much more. 

And it's filled with scripture references as well. No longer can I use the excuse "I didn't have my Bible with me" if I'm needing a quick verse to pick-me-up, to comfort me, to remind me I'm His. 

We're still in the process of making a website, but for now, visit us on Facebook at Diadem Planners. 

Interested in one? Email for more information or to place your order. If you're in Spring, Texas you can order directly from Kathryn! Otherwise we're accepting payment via PayPal at the moment. 

Cost is $18 plus shipping. 

For those of you following this blog, please remember to email with orders or questions to Kathryn as I am not able to check all emails and orders while at the NICU.