Saturday, July 26, 2014

4am

Awake and can't sleep. Missing my girl. She's 3 months now...I sometimes wonder if everything had been ok, would I still be getting up in the middle of the night for feedings or helping rock her to sleep...never thought I'd say it, but I miss those long nights as a new mama up every few hours. If you're a new mama, the nights are long, but so worth it. Soak them up and don't complain about lack of sleep...God made coffee for that. Hold your baby on your shoulder and just love on them in the wee hours of the night.

That's a pose I greatly miss. It's my favorite new baby hold. In those quiet moments when your baby is gingerly sleeping, without thinking, you gently scoop up your new child, sliding ever so gently your hands under their arms, your fingers supporting their back and head, your thumbs wrapped under their arms and around their chest. You lift your child gently to your shoulder, sliding one of your hands to support their tiny little bum, then place them on your shoulder, letting them nuzzle and drool into your neck. You don't mind the spit up, or the smell of it, or the drool that quietly soaks through the fabric that separates your skin from theirs. You just rest, quietly. The grooves of your hand cup their tiny, uncontrolled head for support. I love this hold because it's about the closest you can be to your child. You can feel their chest rise and fall, their petite breath on your shoulder. Their tiny coos escaping their lips.

I miss this hold something fierce. I think that's been one of my hardest challenges as of lately...seeing new moms holding their tiny ones like this. It's such a natural hold. Effortless. I see it as I sit in church. I see it when I'm at the pool, next to a mama who's others are old enough to swim on their own, so they sit, cuddling their infant under the canopy. I see it in stores, where the mama pushes the cart with one hand, and leaves the carseat empty in the cart so that her other hand can hold her child as she strolls through the aisles...sometimes I stand still and stare at them, wondering when I'll get my turn at that hold again. And my heart weeps also in those moments for the wife who longs for a child of her own but is barren...

I know that I'll have to learn to adapt to new holds. My tiny daughter has a trach. That makes this newborn hold virtually impossible. I'll miss it greatly. I know I'll figure out a way around the trach that I will love to cuddle with her by, but in a weird way, I just long to hold my daughter like any new mama holds theirs...

Our hold. We'll figure it out, her and I. We'll get there. And it'll be sweet. I guess our hold will just be a bit more complex. I'll pop the trach off fast to drain any excess water so she doesn't get a drink. Pop it back on and nudge it into place. Perhaps do a quick pass with the suction catheter. With one hand under her head, I'll use my other to nudge under her tiny diaper, and lift her into my arms. I'll decide which arm to support her with, and which to hold the vent tubes. I'll consider ahead of time if I'll need any surgical tape already cut and tacked to the side of her crib. I might need to secure the vent tubing with it, laying the tubes against my chest, reaching for the tape while I hold her with one hand and then securing the tubing and tape with the other. I'll be careful not to bump her g tube site that will come soon. If she has a sats probe, I'll make sure it's secure before I move her. I'll listen intently with a hightened sense for the vent monitor alarms and beeps to know if my moving her is appropriate. I won't be able to place her on my shoulder, but perhaps we'll figure out what suits us best, where she's close to my chest, and I to her forehead, so I can gently kiss it as I hold her and feel her skin next to mine. She'll probably have to be propped more on her side. I won't be able to walk around with this hold and pace the room, the carpet worn from previous late night pacing with her older siblings. So I'll stand there, in awe of her, of this gift. I'll breathe in the scent of antibacterial hand sanitizer instead of spit up. But it'll be ok. But the hardest will be not hearing her coos. Not hearing her baby cries. Not hearing her voice. Because of the trach...the silence is the hardest. I long for the day when I'll be having to schedule speech therapy for her and her voice will finally be heard again. But that's another post, for another time.

Tonight, I'll just dream about snuggling her. Close. Even if tonight she's far away.

I love you to the moon and through the stars, my sweet girl.
Sunday, July 20, 2014

I Smell Like Toasted Coconuts, and I Called 911

We headed home from the NICU for a few days at home. We got in around noon yesterday. I went to a salon and got my haircut, thankful for the stylist who understood our situation because her nephew was in the NICU for a time. Thankful she understood and I could just relax, vent a bit, and get my hair cut.

I took the kids to the pool again. Bliss. Relaxing. Well, other than when Abi's swim diaper burst while she was sitting out drying. And other than the moment my friend, who happened to show up with her little family while we were there, and I were watching Abi swim and thinking she was pulling herself along in the 2 foot deep water only to realize she'd gone under and we burst into panic mode, me yelling at my friend, "GET HER!!!!" because she was closer. Abi was just fine. A little shook up, but just fine. My heart was pounding. Other than that, it was the relaxing day I needed.

The kids and I chilling in the sun. Had a surreal moment where at first I didn't really have the energy or gumption to take them to the pool, then realized this is real life, and next summer, it won't be this easy. 


I did a little DIY repurposing. Took this old but loved dresser and made it into a kitchen island. We've been moving furniture around to make room for Chloe's crib to be downstairs. This used to house my coffee bar, but alas, it needed moved to make room for my Grandma's hutch, which had to be moved to make room for the TV, which had to be moved to make room for the rocking chair, which had to be moved to make room for the downstairs crib. I LOVE doing projects like this, so it was actually really relaxing 
and destressing to me. 

We played with Baby Chloe dolls. I taught Isaac how to swaddle his Baby Chloe doll. Abi took hers everywhere that afternoon. Including to a friend's bonfire, or barn flower as Abi called it. 

Enjoyed this more than I can say. Did we stay wayyyy too late? Yes. But it was my first, and probably only, bonfire of the season. I wanted it to last, even though I could tell our hosts were tired. They were sweet enough to overlook their tiredness and let us stay later. I soaked up the smell of the crackling wood. My children ate WAY too many marshmallows. I think Isaac had 6 s'mores. We laughed. We actually enjoyed ourselves and let our guard down to relax. I tried calling to check on Chloe while we were there, but somehow my ear dialed 911 instead. True story. I argued with the lady and insisted that I was simply trying to call and check on my daughter in the NICU. "Ok, well, somehow you dialed Riley County Emergency services, so if this is not an emergency, and you didn't mean to dial 911, then I need you to hang up." 
That I did. 

It was a normal day, for as normal as a summer day in this situation can be. I nearly broke down three times, thinking of everything. But I held it together and we got through the day as a family, complete with Alan cooking home made spaghetti for Isaac. 

At bedtime, we tucked the kids in. I laid out their clothes for church, and my clothes for church, in an attempt to be organized. I had made a goal for myself of getting up extra early and getting out the door to church extra early so I could swing through our beloved coffeeshop, Radina's on the Hill, and get a skinny raspberry mocha on my way to church. It was all planned out. Poptarts were already set out at the kid's seats at the table so they could have a nutritious and well balanced breakfast before church. I got my bible and journal and a pull up shoved in my tiny purse. I set out the kid's shoes. I placed my sunglasses and the keys on the newly hung shelf above the coat hooks by our front door, the shelf that was once part of my coffee bar and I made Alan hang in a new place for a new purpose just yesterday. I was so proud of finally having a place to put our keys and daily trinkets, that I even showed him. "Look hun! A place for the keys!!! They won't get lost anymore!!!"

I crawled into bed after consuming an 11pm snack of ibruprofen for allergy drainage throat, and fell asleep within seconds of my head hitting the pillow. I vaguely remember Alan kissing me goodbye before he left for church at 6am. Abi was crying, so she climbed into bed with me, in the same clothes she wore to the bonfire the night before because she was too tired to get changed. We both smelled of bonfire. And it was snuggle time and back to sleep. That was at 6:30am. A few more minutes of snuggles, then day #2 at home would begin. 

I finally woke up. I laid there for a moment looking around our room and thinking to myself that the size of our room at the Ronald McDonald house was the same size as our bedroom. I thought about the empty pack n play beside my bed, hoping it'd be filled soon with a baby and baby stuff, then wondering if it'd fit all her medical stuff. I watched the fan. I finally reached over for my phone to see what time it was, thinking it was 8am.

8:44am. 

Church starts at 9am!!!!!!

FLEW out of bed! Raced to the bathroom. Realized my hair didn't look half bad, so threw it back in a pony, washed my face, brushed my teeth, all the while hollering at my 2 year old to get out of bed and come go waters (code for potty). Slapped on the clothes I'd set out the night before. Smacked on a bit of deoderant. Stripped my daughter, placed her on the potty, put on a new pull up, listened to her scream as I tried to brush chlorine-watered-knotted-fire-smelling-marshmallow stuck-hair while she washed her hands. I thought for sure this would wake her sleeping brother, but alas, I was still yelling from the other room to get him to wake up. He was still asleep. How child?! Did you not hear the chaos?! GET UP!!!!

I sent both kids downstairs, told them to throw their shoes on and wait by the door, reassuring them Mommy would feed them a donut at church, knowing in my mind that there was ample chance the donuts were by now gone. 

I remembered I smelled like fire and quickly doused myself in Bath and Body Works coconut body spray. I now officially smelled like toasted coconut. Great for coconut cream pie. Not great for church. 

We raced to the door, I reached for the keys, but they weren't there. 

NO KEYS.

9:04am

Church had already started, but I could still make it. I instructed my children to look through the shoe tote below to find the keys, thinking for sure they just dropped. I texted my worship leader husband, knowing full well he was probably singing by now, "Did you take the keys?!" Like he'd respond (this I knew when I sent it, but it was a last ditch effort). I was adamant to get to church one way or another. We've only been back one Sunday in 12 weeks. I needed the morning worship. I needed familiar. I needed normal for one more day. 

I rushed the kids out the garage door, realizing I couldn't lock the front door, and said we're walking, let's go. Church is about a 1.5miles away. It'd take a normal adult 31 minutes. I only know this because I google mapped it just now. My children are 2.75yr and 4.6yr old. They'd never make it. And my daughter has a blister on her foot. And my children didn't have breakfast. And I'm wearing a dress and flip flops. What was I thinking??? We turned around, a half block from home, and walked back, all three of us depressed because we really wanted to go to church. Came inside and found the poptarts. Cracked open a Diet Pepsi for my breakfast because we are out of creamer. What good is coffee if it's black? I shook the Half and Half from last week, thinking it'd still be ok, only to get it all over because the cap wasn't on tight. Diet Pepsi it was. 

I yelled at my children for fighting over the last poptart. I lost it. I was fuming by this point. It was obviously the WRONG attitude. So things didn't go the way I thought. Again. Thus is life. 

By now Alan called and simply said, after a deep sigh, "I'm sorry, hun." I could tell he felt bad. It was a simple mistake. Sadly I wasn't the most forgiving wife, and told him I required Chipotle for the mistake and that he'd be taking the kids to Sunday evening church by himself so I can go for a very long walk tonight. 

So instead of church, we're laying low at home right now. My children are playing piano, watching Tinkerbell, playing with trains, and yanking the baby Chloe doll up by her oxygen tube. 



This is life. Real life. One. Day. At. A. Time. 


Friday, July 18, 2014

Chloe Update & Upcoming Surgeries

It's been a whirlwind the last couple of weeks since Chloe got her trach. We call it her trach trunk. Goes well with her elephant theme ;). It was meant to be I guess.

Originally we were told after her trach that we'd wait 3 weeks out and get the g tube (feeding through stomach) and fundoplication (aka fundo, fixes hiatal hernia and helps prevent reflux). Then one week after that surgery she'd get her BT shunt in her heart.

However, that's been changed about a thousand and 2 times now. We haven't updated a prayer request for this because we didn't know how and what and when to be praying. But now we have a plan...

Her PDA duct is closing off, and the prostins are helping it stay open right now. Because this is closing off, if she weren't on the prostins, she'd be desatting constantly and in serious trouble. With her heart not stable without the prostins, she needs the heart surgery first so that she's stable for the gtube surgery. New game plan is now to do BT shunt last week of July (haven't narrowed down day, but somewhere between 28th-30th it sounds like). This would put her 4 weeks out from the trach surgery for that BT shunt surgery. Another reason we're waiting is because her trach site-the stoma-needs to be healed before surgery as there is a chance they might intubate and take the trach out during surgery for easier access to her heart.

After the shunt surgery is done and healing is well under way, and her heart is stable, then she's have her g tube and fundo. After healing from that, there's a chance she could go home to continue growing for her next heart surgery, the Glen, at around 6-ish months old. I have no idea anymore when they'll do things like her cleft lip surgery. Everything is somewhat up in the air until we figure out the heart issue.

Ways to be praying:
1. Pray for low vent settings. She cannot be on very much vent settings for surgery.

2. Pray for continued relief from extra secretions (which could cause her to aspirate or cause damage to her new trach if suctioned often). She's on a new med for this, but it's highly delicate...a lot of possible side effects, so they're only using it long enough to see if it works. If it doesn't, we get rid of it. However, I got to hold her for 2.5 hours last night and she only needed suctioned 3 times. This is amazing! Usually she needs suctioned at least twice every 15min before.

3. Continued wisdom for the doctors as they all consult with each other-between cardiologists for BT shunt surgery, ENT for intubation thoughts on surgery, ENT for continued healing of her trach site, neonatologists, nurse practicioners, nurses...please pray for wisdom, knowledge, skill for her whole team.

4. Pray for the surgery. We're getting nervous as we start to approach surgeries. Chloe is doing well, but with any surgery comes risks. Please pray for healing and peace in our hearts during these coming weeks.

5. For our kiddos. We've had them with us since July 9th and will continue to have them until the 27th, then we'll have a friend keep them that week of Chloe's heart surgery. They're loving time with us, and we're making a point to do fun things with them, zoo/Deanna Rose farm/parks, while Alan and I trade off who sits with Chloe. One of us is always with the kids when the other is with Chloe. Feels weird not getting to get updated together by Chloe's bedside, but it's helping the other two to thrive. Nervous for their little hearts to have to go back to friends soon.

6. For Chloe's delicate dance. Example: We were able to take her off lipids since her feeds are up to 15mL per hour. Nixing the lipids means we can up her chloride which will then help with her heart and extra fluid. Getting the right balance of nutrients for her means she can grow better and not keep doing this gain fluid, lose fluid game. It means we can get her electrolytes under control as well. Having the right balance of the rubinol (meds for secretions) means hopefully less side effects. Having the right balance of feeds, meds, reflux meds, nutrients, etc. will help her to grow. We were joking the other day with her neonatologist that we need to get her little ballet slippers to hang on her bed to remind us all of the delicate dancer she is ;). Anyone know where I can find some???

7. Please continue to pray for safe travels for our family around KC and between KC and Manhattan.

8. PRAY SHE GAINS REAL WEIGHT and gets to that 7lbs soon!!!!!!!

Ways to be praising:
1. He is with us always. He will never leave us or forsake us, even now.

2. Thank you to the National Worship Leader Conference for free tickets to the Brilliance, Rend Collective, and Meredith Andrews concert. A much needed night of worship. Thank you also to our friend Chelle for watching our kiddos that night. #blessed #recharged



3. For all who have sent cards and gifts. We have not forgotten about you all, but have been so, SO blessed by each and everyone of you, whether it be money, gift cards, things for the kids, meals, coffee...the list goes one and we are so, so grateful. You all are carrying us through this time. I may not get a chance to thank each of you personally or with a hand written card like I'd like to do, but know that as I sit and rock Chloe, each of you comes to mind and we are thankful. 

4. Alan led worship back home last week and we were beyond encouraged and loved by the many at Grace Baptist in Manhattan. We are grateful for each of you. Thank you to the elders for loving on us and asking us how we're doing, for the hugs, for the encouragement. We are blessed to see the body of Christ loving us through this time. 

5. Praise for down time. We came home last weekend since Chloe was doing good. I took the kids to the pool. We played with their toys. We had family dinners together, just the four of us at our own dining room table. Alan hopes to cook spaghetti this weekend in our own kitchen as he commented just yesterday how much he misses cooking. Ever since we got married, cooking dinner together as a family has been a favorite nightly activity, and we both miss it. On Monday Alan went to work while I took the kids shopping for a dresser to store all of Chloe's trach care stuff in when we get her home. According to nurses, Chloe needs to be in a common area by kitchen and bathroom because home health nurses will be with us 24/7 for the first couple of weeks. So after Hobby Lobby, happy meals, and having fun on the playground playing and running in the rain, I loaded up the kiddos and we went home to work on cleaning and organizing for when Chloe does make it home. Perhaps it's wishful thinking at times, but we choose to call it Hope as we prepare our home for her. Here's a few pics of our living room/nursery. 

Taking the time to smell the roses at Hobby Lobby.


Some sketches I did during church that are verses we're clinging to these days...

...that I framed on our mantle.

Chloe's corner. Can you tell? Perhaps the elephants gave it away. Soon this cabinet will be filled with trach tubes, vent stuff, saline bullets, gloves, 2x2s and 4x4s, alcohol wipes, extra suction catheters, diapers, wipes, clothes, swaddle blankets, the list goes on...


We'll move the little cradle we have there that the kids have been playing with their baby Chloe dolls in and a friend is lending us her old crib so that we can put the other crib in our bedroom so that we have one on each floor. Love this arrangement as the chair will be close to her crib and vent stuff for when we hold her. We were really hoping the laundry would fold itself, but no such luck. 

6. Finally, praise the Lord for our sweet little friend Charlotte. After a 7+ month journey, the words "going home soon" have fallen out of the mouths of her doctors, and her family is OVERJOYED. Let's celebrate this victory with them!!! Please pray for them as they adjust, not just to bringing her home, but to the house they JUST bought yesterday as well, that they can get moved in and set up quickly. 

THANK YOU ALL for your continued prayers and support. 







Monday, July 14, 2014

Define Normal

Back in February we were in a meeting with PACT after our regular monthly ultrasound. They asked what our goals were for Chloe. We said live birth, get her healthy, get her home, attempt a new normal. 

New normal. 

That means there must have been an old normal. 

Day 80. Today is Day 80. Not that we're counting. 

And by now we thought our new normal would include Chloe being home with us. But alas, she's not quite ready, so that means we continue to get through this one day at a time till she can come home. 

So what does our new normal look like?



Packing. A lot of random packing. We have a 2.75 year old. She's still potty training. Even a few hours at the hospital requires extra pull up packing, doll packing, coloring packing. Trips home to Manhattan require laundry, though we're trying to keep half there and half here, wherever there and here may be.
  #new normal


Some days we don't have the kids. This was one of those days. I think it was around day 73. Or 72. Or 74. Either way, it was last week. And last week was a long week. And NICU life caught up to me. I didn't want to get out of bed. Had no desire to meet the day. This was my 11am self portrait. I was texting with two friends from my cotton sheeted hideout. One replied to this image with, "Bless your heart...that's why you have insurance and the nurses are well paid.". She encouraged me to just rest. Another, more blunt, friend texted, "You look like crud," then an hour later, "Your bum outta bed yet?". I actually love how the two responses were so different. One loved on me. One called me out, in a loving way. Neither brought me coffee, regardless of the fact that one lives in Manhattan and the other was halfway to Des Moines on a trip. I still blame them. P.S. They're both NICU/PICU Mama Alumni. They get it. No judging on their part. Thankful for that. 

**I hate selfies. I never take them. I think this was the 3rd time in my life I've done a true selfie. The point of posting this disastrous picture of myself is to show the real, unedited NICU life. It's draining. It's wearing. It's tiring. We both sat down around 3pm, after a late lunch, intending to go see Chloe, looked at each other and just sank into a deep sleep in bed. We just were flat out worn and couldn't bring ourselves to go back. We slept the afternoon away and didn't get back to her until about 8pm. You feel guilty when you're not with her, exhausted when you are, and doctors in the NICU start calling you out on not taking time for yourself. So you make trips to your happy place {Target}, munch on chips and dip and diet Pepsi at our favorite new taco place, take a nap, then back to the NICU to sit with Chloe till about 11pm. It was our
 pre-children-back afternoon and evening routine after sitting with her all morning and into the afternoon. Long days. #new normal

We thought that was our new normal, but then we got the kids back. 


{His father dressed him. He buttoned it himself. Team effort. #not new but totally normal}


We made our first Costco trip as a family, and have the lovely new membership cards with our hideous mug shots to prove it. Our attempt is to stock up, leave half the dry food in the RMcD house for snacks and breakfasts and the rest in Manhattan for days when we're home. We'll see how this goes. Kids, I hope you like Goldfish 'cause we bought it in bulk. #new normal


Discovered the joy of caffeine in bulk. Well, that and my friends fake coffee, chai latte, in bulk. 


Walked past this sign on the way back from taking child #1 to the bathroom, only minutes after I took child #2 to the bathroom. Sign made me slightly nervous. 


We attended church today for the first time together since Easter. Well...together is a relative term. We were missing a very important new member of the family. Felt good to be back. Felt horrible not to have her. I remember when our other two were born. I loved snuggling them during services and singing the hymns in their tiny ears. I longed for them to hear these Words of Truth even at a young age. I long to do that with Chloe too. With all three kids, church was one place they ALWAYS kicked and moved in the womb. Two were still kicking and moving today to the point at which I had to take them down to nursery. Came back up to sit through the service, only to find myself highly distracted by the many, many new babies. Something is in the water in this town. And Chloe was in that group. These other babies were supposed to be her playdates while I chatted with their mommies and let the other littles run wild in bare feet this summer. Adjusting to the fact that they all have their babies home and in their arms, and my sweet child is still in the hospital, not yet breathing real, fresh, non-sterile summer air. Me sitting in church watching babies be snuggled up on shoulders. You know the pose-baby over shoulder, nuzzled into mama's neck, mama's hand patting their tiny back, mama's hips gently rocking to the rhythm of the patting. I've thought about this pose often lately because it's one of my favorite new baby holds...and yet, I find myself thinking, "I wonder if I can put her on her belly with a trach? Can I hold her on my shoulder to burp her with a trach? Can she burp with a trach? Guess I won't need burp rags." #new normal



How I distracted myself from the many babies surrounding me during church service today. My weird attempt to stay grounded in the Word these days.Took pics of them tonight-ignore the naked ugly ruined pedicure, courtesy CiCo public pool. Must find matching coral colored polish. Frames purchased today for a quick DIY-therapy mantle redo tomorrow while the kids play and Daddy's at work. 

I took the kids to the pool this weekend. It's another one of my happy places. Target+Pool=Bliss. Today I attended both back to back. It was amazing. I stared at chalkboard stickers in aisle 10 and considered how to label Chloe's trach care stuff when she gets home {#new normal}, until the kids told their mama to snap out of it and get them to the pool. 


Buying Chloe a pretty dress to wear once her PICC line and midline are out {can't wear clothes with them right now}.  Buying clothes with no clue when our sweet daughter will fit them or be able to wear them...#new normal

We finally got to the pool at 3pm. While paying for the admission, I was searching for where I hid the pool money and Isaac talked the poor lifeguard/cashier's head off about his sister in the hospital that the doctors take care of and are making her better until we can bring her home. His words, utterly unprompted. I think the cashier about cried. Bless her heart. She just thought she was taking money today, not counseling a four year old on his sick baby sister. #new normal

Isaac learned to put his head under water, hold his breath, and then stay under all in about 30min. It suddenly snapped and came naturally to him, and now I have a little water buddy on my hands. He can't get enough of the water. Felt amazing to watch my little man learn something new. Incredible rush of love to see my son learning and experiencing something {swimming underwater, then coming up to tell me the water is blue underneath as well, with joy in his goggled eyes because to him, this was new}.


It was just my little dude and I at the pool on Saturday. He loved our "mommy-Isaac date" day. I asked him if he was enjoying it and he said yes but he wanted to do something else after we swam. I asked what he'd like to do to continue our date and he said, "We could go to Target!" Little man after my own heart. But no. Mama doesn't have a change of clothes, and she's already scarred the patrons of CiCo pool with her postpartum swimwear. She need not do that to the patrons of Target either. 

We ended up being surrounded by many loved friends who eventually showed up during my sunburn {Hint: ear infection antibiotics=side effect of staying out of sun. Learned that one the hard way}. It was good to see them all, talk, watch the kids swim and play. But it was also hard. Hard to think about how often they've probably gotten to do something like the pool this summer, whereas on Saturday, that was my second trip this summer to the pool with my children, the first trip being last Tuesday. Hard because I watched my friend hold her sweet, adorable, chubby little almost 4 month old, and fought back tears while chatting. She's an amazing friend who did nothing wrong. Just had a baby. Just enjoying her baby and a day at the pool. And yet it was hard for me to talk. To engage without my mind wondering back to my Chloe in her crib in her tiny room in her first home. So I fought back tears in an effort to try the old normal and pretend everything was fine. I needed to or I would have lost it. And I'm not pretty when I lose it. I've been known to have "a moment" with the hospital chaplain assistant, a nurse or two, and a charge nurse all in the last two weeks. Didn't want to get all emotional during a day at the pool. Sometimes you run out of the room in tears to hide and be alone. Sometimes you suck it up and hold the tears back because you don't want to deal with the rawness of it. That was Saturday for me. #new normal

And now it's 2:18am. Exhaustion has finally set in. Time for bed. And then get up and do it all again tomorrow. The crazy, chaotic cycle will continue tomorrow, with Daddy at work till afternoon, then loading up the van yet again for another week back in KC. 

We can do this. We're a family. We're in this together {keep your stick on the ice!}. We've got this...only by the grace and love and peace of God. Thankful His arms are strong enough to hold us all.

I leave you with a few funny selfies from me and the Abbers...










Sunday, July 6, 2014

A Miracle Story Part 3



Monday Morning

Monday morning came all too fast for everyone.  Micah and I finally fell asleep probably around the time the sun was coming up.  We slept for about an hour or two, then showered and went back down to see Miracle.  We were able to spend more time holding her, talking with her and just being with her.  Her levels were more stable than the night before, and she didn’t seem to be in too much pain.

IMG_5772  

But.  It was agonizing.  Heartbreaking.  Gut-wrenching.  We knew what was coming.  One moment I was experiencing the most joy I had ever experienced in my life, and the next moment I was thinking about what the next 24 hours were going to look like.  I knew.

IMG_5774

Several different doctors came to assess Miracle in the morning.  The head neonatologist along with a resident and two medical students wanted to have a meeting with the team of doctors.  They wanted us to start thinking about goals that we wanted to have for Miracle’s life and what our priorities were for her life.  We also met with the neonatal palliative care team which helps the families of patients with serious illness focus on quality of life.  They encouraged us to also think about goals that we had for Miracle while she was still with us.  The geneticist also came to take some measurements.  He explained that from what he has seen so far, Miracle showed all of the signs of having Thanatophoric Dysplasia.  However, he could not confirm the diagnosis 100% without genetic testing which could take 6-8 weeks.  He went ahead and took some measurements of her body for further indication of her diagnosis.  After we met with each of these teams, we decided to have a meeting at 11:00am to hear more about each doctor’s opinion and experience with this condition, what the next steps might look like, and what decisions we needed to make. 

At this point, Micah and I took a walk to get coffee and to breathe before the meeting.  I remember throughout the morning being in a fog.  Walking through the hospital seeing so many people.  I remember walking the halls crying and crying, unable to control any of my emotions.  These emotions were like nothing I had ever experienced.  I didn’t care who saw me or what they thought.  The only thing I could think about was our daughter.  Like I said above, I had so much joy when I held Miracle, but I also felt that I had been placed in the biggest nightmare of my life.  I was really hoping this was all just a dream. 

The Big Decision

{This post has been sitting in my drafts for quite some time. I couldn’t bring myself to write it out.  Words do not express the depths of my pain in this heart-wrenching decision.}

Monday morning around 11:30, Rockele, Meisha, Helena, Micah and I met with a large medical team to discuss the diagnosis.  Some of the medical team included the head neonatologist, 2 resident neonatologists, geneticists, many NICU nurses, palliative care doctors, child life specialists, a music therapist, and a social worker (I may even be missing some people). 

It was in this meeting that the expected diagnosis was brought to light.  In order to fully diagnose Miracle with Thanatophoric Dysplasia, a geneticist would have to do several blood tests and those tests would take 6-8 weeks to confirm a diagnosis.  However, the geneticist did take measurements and take a look at the x-rays that were available.  With that information, he was quite certain that she had this rare genetic disorder.  The head neonatologist (who was probably in his 60’s) said that he has only seen maybe 5 cases of Thanatophoric Dysplasia in his time at UICH, and in each case the baby passed away either in the womb or within hours after birth. 
Most of what was said after the diagnosis is a blur.  Each doctor gave his opinion on what they thought the best option would be and what their limited experience had been with Thanatophoric Dysplasia as well as what their research told them.  Unfortunately, it did not look good.  We knew this going into this meeting, but now it was official.  There was no hoping for a different diagnosis or hoping for a way out of the situation.  We had a daughter with Thanatophoric Dysplasia, and she was fighting for her life. 

They explained that the level of oxygen she was on currently was going to be enough maybe for a little while longer (could be hours or a couple days at best), but eventually she would need to be put on a machine that did 100% of the breathing for her.  At that point, the palliative care doctors and child life specialists took over.  They explained that no matter what decision we would make (today or sometime in the near future), their job was to honor our wishes for Miracle’s life.  They wanted us to begin thinking about the kinds of things that would be important to us to have Miracle experience as well as things that we would want to experience while she is still with us.  They gave us quite a few ideas and were very kind.  I could not imagine having their job.  I don’t know how they do it.

After the information over-load (yes, that is exactly what it was), we all needed a short break.  Emotions were running high and we needed to discuss things as a family.  They left us alone and we made the decision.  We didn’t want to have Miracle live through a breathing machine.  We needed to let her go.  But, we weren’t going to make the decision unless every single one of us (Rockele, Meisha, Helena, Micah and myself) were on board. 

This was the hardest decision we have ever made, and it is the decision that haunts me every day (even still).  How are you supposed to make the decision to turn off the machine that is keeping your baby alive?  It doesn’t seem right.  I know that I didn’t kill our baby, but we were the ones that said “yes” to turning off the machines that were keeping our baby alive.

Monday Afternoon

After we made the decision, we went down to the cafeteria to eat.  Deleon and Delonte were hungry, and although the rest of us didn’t feel hungry, we needed nourishment.  It is so true that you really are in survival mode when going through traumatic events.  I never felt hungry, and although I didn’t ever feel like eating anything, I usually found myself to eat just a little of something.  That little bit of food seemed to get me by.  After eating, Micah and I took the boys back up to Miracle’s room.  We let Rockele, Meisha and Helena take a break.  I carried Delonte and just a few minutes after leaving the cafeteria, he fell asleep in my arms.  That boy was so tired.  Both of them were.  They were so exhausted.  They didn’t understand the depth of what was going on, but you could see the sadness and stress in their eyes.  They knew something wasn’t right.  It felt good to hold Delonte.  He fell asleep in my arms, and when we got up to the room, I continued to hold him for a while.  Both of the boys ended up taking naps, thankfully.  It gave the rest of us time to discuss more details.

We decided that after dinner and once the boys were in bed, we would turn off all of the machines.  We also decided on some things that we wanted to have as keepsakes.  These were things that the hospital provided for us at no cost.  Micah and I were blown away at the generosity, kindness and support that the hospital showed not only Rockele and Miracle’s birth family, but also to us.  Since there was no legal adoption, they could have at any point told us to leave.  But, the staff saw us as Miracle’s parents just as much as Rockele.  We were very thankful for that.

One thing that we decided was to have molds made of Miracle’s hands and feet.  We also wanted to have a professional photography session so that we would have photos to keep.  We also were able to pick out an outfit for her to wear once she was off the machines, as well as an outfit to wear after she passed away. 

I felt pretty overwhelmed by everything that was happening.  I remember walking over to the window near her room (it was really a hallway).  I began to cry, crying turned to sobbing, and sobbing turned to weeping.  I have never experienced sadness to this extent – even through the 4 years Micah and I had experienced with infertility.  Nothing could ever compare to the grief I began to feel.  I lay on the floor, unable to get up, struggling to breath.  I didn’t know if my life was worth living without my daughter.  I hate that I am typing those words, but it is true.  I wanted for the pain to leave, to hit the rewind button.  But I knew it wasn’t possible.  I realized I was broken into a million pieces.  My heart physically hurt from the pain. 



The Hallway

I was on the ground in the hallway just next to Miracle's room. Sobbing uncontrollably. I remember several people - Micah, Meisha, a nurse all coming over trying to console me. I couldn't breathe. I wanted so desperately to put myself in Miracle's place. I wanted to be the one that they took off of life support. I didn't sign up for this. I didn't want to walk this road. I thought we would be going home with a baby. Not an empty carseat and a suitcase full of baby clothes that would never be worn. No, no, no.

It was in this moment that I felt the furthest away from God that I had ever felt up to that point in my life. If God was really good, then why more and more suffering? Had I not suffered enough? I so desperately wanted to become a mother. I finally get the chance, only to have it stripped away from me just days later?


I sat in that hallway for at least an hour. I would have sat there longer, but I quickly realized that my time was very limited with Miracle. I wanted to spend as much time with her as possible. I knew we didn't have much time left. I got up, entered her room and asked the nurse to help me hold her (we couldn't just pick her up like a normal baby - with all the tubes, we required assistance picking her up, holding her, etc.). I sat in the rocking chair rubbing her head. The tears never stopped.



A Miracle Story Part 2

Continuing to share the story of Miracle. Excerpts taken from the blog www.themakingofafamily.com

Family

Before I continue with our story, there is something to be said about our birth family.  The Cooper family deserves a post all of their own!

The story of how we met them is nothing short of amazing.  So, grab yourself a cup of tea, coffee, whatever you enjoy and relax.  Take the time to read this story that God has woven together so perfectly.  You won’t regret for one second reading this story.

Pictures (left to right):

Rockele – Miracle’s Birth Mother

Meisha – Rockele’s Sister (Miracle’s Aunt)
Helena – Rockele & Meisha’s Mother (Miracle’s Grandmother)


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2009.  Micah and I lived in Burlington, Iowa. I was a full-time graduate student at Western Illinois University.  Micah was also a student, preparing to transfer to Iowa State University the following summer.

On a cold December day in 2009, Micah was driving along Agency Street in Burlington.  It was a very cold day, with snow on the ground.  He drove past a young woman with two very young boys.  He could tell they had been walking for quite a while and were walking towards Wal-Mart.  He drove by, but he didn’t feel right.  He couldn’t stop thinking about this woman.  So, he turned around.  He stopped and asked the woman if she would like a ride and where she was headed.  She was headed to Wal-Mart to go grocery shopping, and she accepted his offer to drive her and her 2 young boys.  Micah drove her to Wal-Mart and even paid for her to get groceries, then drove her back home.  When driving her home, he realized that her apartment was 1.5 miles from Wal-Mart.  She did not have a car or a job.  Her boys at that time were 2 and 6 (if I remember correctly).

Micah came home and told me about this experience.  I will admit that I thought he was completely out of his mind.  But, I have always known that Micah shows his love to others through acts of mercy.  This was another one of those moments.  I have seen him time and time again show mercy to others in small ways. We balance each other out….I’m not so good at it.  He has taught me so much in the 6.5 years we have known each other.
The next day, I remember him calling Meisha and seeing if she needed anything.  He wanted to keep in contact with her. We ended up inviting her to a church event in our community where we would talk with parents (mostly single parents), play games with the kids, create relationships and share the gospel.  Meisha and her two boys ended up coming to these events and also to church with us on a regular basis. 

That Christmas, our small group was able to do something extraordinary.  Micah and I knew that Meisha would not have the money to buy a lot of food or probably any gifts for her boys.  So, we approached our small group about doing a service project.  We all got together and donated money.  We then went on a big shopping spree to Wal-Mart where we bought anything you would ever need to cook a holiday meal.  We also bought tons of Christmas gifts for the boys - clothes, toys, books, you name it!  After the trip, we completely surprised Meisha at her house.  We unloaded the cars (yes, it took multiple vehicles to load everything) and blessed her.  It brought every one of us an immense amount of joy. 

I’ll never forget sharing the gospel with her and having her tell me that she was ready to become a believer.  She became baptized on March 22, 2010 at Harmony Bible Church.  It was one of the most joyful days I can remember. 

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When Micah and I moved to Ames, we stayed in contact with Meisha, but it was pretty limited – mainly through social media.  And then, out of the blue, June 12th happened.  

Throughout this experience, Micah and I would both agree that Meisha, Rockele, and Helena have welcomed us with open arms into their family.  In many ways, they have become closer than our own families – mainly because they walked with us through this journey and have experienced it themselves.  At any moment, they could have said that they didn’t want us at the hospital.  But, they didn’t.  They showed us love and kindness the entire way.  Words do not describe the amount of love that we feel towards the Cooper family.  And we cannot thank them enough.

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So, I will say that you never know what a small act of kindness to another might do.  In this case, it was a divine appointment when Micah turned around to pick up Meisha and her two boys on that cold winter day.  Never in my wildest dreams would I have thought that I would be telling this story today.  Truly amazing.

A Miracle Story Part 1

Miracle Renee Stevenson Cooper
July 7, 2012 ~ July 9, 2012




They've been on our hearts and minds, our friends Amanda and Micah. This week they'll remember their daughter, Miracle, who was born with a rare and fatal dwarfism two years ago tomorrow. They've been through the fire. Please read their story. Please remember them in your prayers this week. If you know this sweet family, please encourage them and love on them this week. If you don't know them, feel free to leave comments of encouragement and love below. 


Amanda and Alan were friends in college, then met me later when I transferred in. We've been through a lot in our friendship. Alan was there when Amanda went through ovarian cancer in college. We watched her go through chemo my last year of college and I remember being amazed during that time how strong she is. We've watched them battle infertility. They've watched us grieve the loss of our first pregnancy to miscarriage. But we never, ever thought we'd both be moms of preemies. Moms of rare disease kiddos. It's bonded us like glue. 

Sweet Miracle has touched our lives. Even though two years have passed, she is NOT forgotten. Her story is NOT forgotten. Here's their story...


{The following pictures and posts were taken from Amanda's website, 

The beginning.
Friday, July 6th.
Micah and I received a text message from our birth mother (Rockele) saying that she was unsure about her decision.  Of course, I spent the entire day worrying. There were many tears. I know this is pretty normal with birth mothers, and we respected her decision no matter the outcome. Adoption is a huge decision.  We didn’t want her to feel pressured.  I cancelled my evening plans (my 10 year high school reunion), and Micah and I went out for dinner.  That night, I decided to run a 5k race the next morning with my good friend Mindy.  I originally was going to run it, but then with my high school reunion I wasn’t sure that I would be able to make it.  Ironically, the 5k race was a race to raise support to provide grants to adoptive families.  You can read more about that race here.

Saturday, July 7th.
I woke up around 5:30am. I remember getting up and prepping for the 5k race that I had planned to run with a friend the night before.  I wasn’t really wanting to go, but since I told Mindy I would be there, I didn’t want to back out.  I was so glad I went.  It cleared my thoughts about the adoption chaos from the day prior.  I even ran my fastest 5k yet! We stopped at the Ames farmers market (which I was highly unimpressed…..), and then were in the parking lot of our local co-op when we got “the call.” 

9:22am.  Rockele’s water broke, and she wanted us to come to Burlington!  We rushed home. As much as I wanted to just pack our bags and leave, I was pretty stinky from my race.  So, I showered, Micah packed all of the baby things we anticipated that we would need for the next 2 weeks or so. About 30 minutes after we arrived home, we again left. I have never gotten ready for a trip so fast in my entire life.  Our car was packed full with our suitcase, the baby’s suitcase, all of our adoption paperwork we would need, etc.  We began making phone calls to our closest friends and family, and our case worker.  Our excitement was off the charts.  Little did we know that the excitement we experienced would not last long.

Devastation
Saturday, July 7, 2012
Micah and I were making the drive to Burlington. It is a 3.5 hour drive, and on this particular day it seemed to last an eternity.  God was already at work and taking care of every need along the way. Our friends from church, Jason and Jen, happened to be in Burlington on Saturday. This was no coincidence.  Jen has been a huge help in this adoption. She has answered so many questions, prayed for us, and has been that shoulder for me to cry on when I needed it.
Just after we left our house, we got the call at 9:52am that our baby girl was born.  We didn’t know details about her condition, but we would later find out that she was already beating obstacles no one ever thought she would.  She was born at home, breech, at the hands of an inexperienced EMT. After Rockele’s water broke, there was not enough time to get to the hospital.  The birth happened very quickly.  We knew she was on oxygen, but we were thinking that might be normal.  She was technically a full-term  baby, but was 3 weeks early. {Side note: After doing some research, I found that most babies born with Miracle’s condition are breech, and therefore if they make it to term are born via c-section.  More on that later.}

I can still remember the exact location we were when Meisha called us.  She informed us that the doctors did not think that our daughter would make it through the night.  They had taken her off oxygen (another post), and were just waiting to see how long she would survive. I went numb. This could not be happening. I had so many questions, but none of them were answered. I was holding out so much hope that nothing was wrong and that there was just some miscommunication somewhere.  I was also hoping that if the doctors were somehow right, that we would make it to Burlington in time to meet our daughter.  Devastation set in.  I began making some more phone calls, and lots of crying in between.  I started to read my Bible and Micah and I prayed together as we drove.  Well, he prayed and I cried.

Our Miracle

Saturday, July 7, 2012
We arrived at the hospital shortly after 1:00pm.  I remember being so nervous walking into the room.  This was the moment we had been waiting for since 2008.  I know that we didn’t fully understand the diagnosis, but when we walked into that room, we became parents. For a few moments, it didn’t matter what the doctors said.  I believed, no matter what anyone else said, I was a mother for the first time. 

Before anyone placed Miracle into my arms, the first thing I did was give Rockele the biggest hug I think I’ve ever given anyone in my life.  I told her how much I loved her, and that there were so many people already that loved her sweet baby.

I remember when Miracle was placed in my arms for the first time.  I stared at her for what seemed like an eternity.  Time seemed to stand completely still.  This was our child.  Not just our child, but Rockele’s child too.  I will say this until the day I die, but Miracle was the biggest blessing of our lives.  The greatest gift we could ever receive.  She was our miracle.  And none of this would have happened without Rockele saying YES.

These photos are the first time we both held Miracle.






End of Day 1

For the remainder of Saturday, we all spent as much time with Miracle as we could.  We held her, fed her (though she ate very little), kissed her, spoke to her, rubbed her head (my favorite thing to do), and loved her.  Micah and I developed a very deep bond with our daughter.  One thing is certain, our daughter was shown an immense amount of love in her short life. 

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We also had friends that came to visit Micah and I at the hospital.  Like I said earlier, it was no coincidence that our friends Jason and Jen were in Burlington on Saturday.  Just another way that God provided every need.  They came and talked with us and even more importantly, they prayed with us.  Jen was one of the people I was in constant contact with, and I could not thank her enough for just being there for me when my heart was completely broken.  Our Burlington friends/mentors Ron and Jane that came to talk with us (well, actually just me – Micah was busy being a daddy!).  Through these visits and other phone calls, text messages, and emails, Micah and I began to realize what a huge support system we had – even though we didn’t return all of the messages.

Saturday evening, Micah and I were able to spend some time with Rockele by ourselves.  The first thing that she said to us, blew me away.  She said, “Everyone keeps asking me how I am doing, but I want to know how you two are doing.”

Um, hello?!

She continued to talk to us about the adoption like there was nothing wrong with Miracle.  Like she was going to be fine.  I’ll admit, it was hard for me, because I felt like I knew what was going to happen in the back of my mind, even though I was trying to hold on to any hope I had.  She reassured us that we were Miracle’s parents, too.  This was just the beginning of the beautiful relationship we have developed with Rockele over the past 2 weeks.  We talked for a few hours while we all took turns loving on our daughter.  I will always treasure deeply the conversations I have had with Rockele.  And, as I am still learning more and more every day, she is an incredibly special person.

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Around 11pm, Helena arrived from Chicago.  She missed the train, so she took a bus and Meisha picked her up in Iowa City Saturday night.  She remembered us from when we met her a few years ago – how crazy is that?!  I didn’t expect her to remember us, but she acted as if no time had passed.  She welcomed us with open arms.  I remember handing Miracle to Helena for the first time.  Oh, the tears!  Our Miracle was so loved.

I am grateful that we ended day 1 on a positive note, surrounded by family and so much love.  Little did we know the decisions we would need to make over the next 24 hours. 

A Second Opinion

I think I speak for most of us when we say that Saturday night was the first night of many when we did not get much sleep.  Micah and I arrived back at the hospital around 8am.  We spent more time with Miracle and the family.  It was truly amazing.  Sunday morning was the moment I realized that they saw us as their own family.  What an honor.  I remember us asking them if they wanted us with them at the hospital, and they looked at us like we were nuts!  They absolutely wanted us there – we were Miracle’s parents, too. 

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Mid-morning on Sunday, the doctor came in to talk along with a few nurses and a social worker.  They talked about discharge and what would happen when Miracle went home.  Yes, they were fully expecting Rockele to take Miracle home.  They were going to send her home with an oxygen tank and provide some home health care.  Basically, a nurse would come by once or twice a day just to check vitals.  In our opinions, this did not sound like a good option.  They also informed us that once taken off oxygen, there was no chance for survival.  So, we discussed as a FAMILY (Rockele, Helena, Meisha, Micah and myself) what we wanted to do next.

We decided that we wanted a second opinion.  We wanted to make certain that there was nothing else that anyone could do.  We expressed this to the doctor and he said he would look into it.  We knew we couldn’t go out of state because of medical insurance.  So our options were going to be either Blank Children’s Hospital in Des Moines or University of Iowa Children’s Hospital in Iowa City.  The hospital had to be willing to take Miracle as a patient before we could go.  Ultimately, we went to Iowa City, because they were willing to take her as a patient. 
I will admit that I wasn’t sure I wanted to go to Iowa City. I think in my heart I knew that the outcome wasn’t going to be any different, and I felt like going to Iowa City was going to just prolong the pain I was starting to feel.

The University of Iowa sent their own team down to Burlington to take Miracle to Iowa City.  Because of her condition, they did not want to take her via helicopter, and Burlington did not have the technology to transport her to Iowa City.  When the transporters and nurses arrived in Burlington, they immediately started hooking up Miracle to lots of monitors.  This is when I realized that we made the absolute best decision for our daughter (and I still believe that to this day). And, for just a few moments Micah and I felt a glimmer of hope that maybe things weren’t going to turn out as bad as everyone thought.


University of Iowa Children’s Hospital

Once Miracle left for UICH, we helped Rockele with her discharge, ran a few errands, then headed to Iowa City.  We really had no idea how long we would be in Iowa City.  Micah and I gave Rockele and Helena a ride.  Rockele and Helena took naps on the way, and I mostly cried.  I was scared out of my mind. 

We arrived in Iowa City around 6pm, and Miracle was just getting into her room in the NICU Bay 2/3.  There are very strict rules surrounding the NICU which are primarily for the safety and protection of each infant.  When you enter the NICU, you have to call to let the receptionist know who you are so that they can let you in (the doors remain locked at all times). After you walk through the doors, you have to scrub your hands very very clean. First by washing, then by also using hand gel. This is to ensure the safety of all the babies.  We then went through the check-in process, which was overall pretty easy.  We had to fill out paperwork verifying that we were in good health and our relation to Miracle.  Once we did this the first time, we were set for the remainder of our time in the NICU.

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That’s right – she was a Hawkeye!  Sorry Micah, I just had to say it!

Something worth mentioning: When we were in Burlington, Rockele had to verbally say that it was okay for us to be in the room and to hear any medical information when the doctor was in the room.  This was very impersonal.  Rockele (everyone, really) got very frustrated, and it felt like they didn’t really see us as Miracle’s parents.  We understood why they had to do this (because of privacy laws), but it seemed as though it could have been handled a little differently.  Especially once we went to UICH.  When we arrived in Iowa City, the environment was completely different.  Rockele informed the doctors and nurses that we were Miracle’s adoptive parents and that we could have any information at any time, whether or not she was present.  They did not ask any questions, but respected her wishes.  Once this was communicated (which was immediately after our arrival), Micah and I were treated as Miracle’s parents.

For the first several hours in Iowa City, we were not allowed to hold Miracle.  This was the only time in her life where she was not able to be held for an extended period of time.  Their primary focus when Miracle arrived in Iowa City was to stabilize her.  On the main monitor we were watching, there were 3 numbers.  Her heart rate (top), her oxygen saturation (middle), and her respiratory status (bottom).  Here is an example (please note this was not Miracle’s monitor!).


Miracle’s heart rate goal was between 120-160.  This is the top green line.  Miracle had a heart sticker on her chest that monitored her heart rate.  The white line in the middle is her oxygen saturation.  They wanted Miracle’s oxygen saturation to be at 100.  They did not want the oxygen saturation to read below 98.  Once it read below 90, the machine started to chime.  This meant she is not getting enough oxygen.  Miracle had a strap with a bright red light that was attached to her foot that monitored her oxygen saturation.  The bottom white line is Miracle’s respiratory status, which monitored her breathing.  There was a sensor on her tummy that measured movement.  If this this line is flat, that meant she was not breathing and then you would notice her oxygen saturation start to drop.  If that drops too, her heart rate will follow. 

When Miracle was in Burlington, her oxygen levels when she was off of oxygen were at 50.  This is why she was starting to show the first signs of death.  She started to lose her color dramatically.  Once we put her back on, she gained back her color and her oxygen levels improved.  However, they did not have her on a monitor.  A nurse would come and check her levels periodically. 
When we arrived in Iowa City, even though Miracle was on oxygen, her oxygen levels began to drop rapidly – she was in the 50-60 range.  As a result, they changed the oxygen she received to hi-flow.  This meant that she was receiving a higher amount of oxygen, and the speed at which the oxygen was flowing was higher than before as well. 

Another one of the first things they did was to take several x-rays of her chest cavity.  The reason for taking so many is because of the Thanatophoric Dysplasia.  Babies that are born with this type of dysplasia ultimately die from respiratory failure.  Their organs grown normally.  However, because of the extremely small chest cavity, the organs push up into where the lungs should be.  As a result, the lungs do not develop.  So, Miracle had some lung tissue, but not enough to sustain life.  They took x-rays every 30 minutes for the first several hours to monitor her progress.  Miracle’s first set of x-rays showed that there were air pockets in her chest cavity.  These air pockets were concerning for several reasons.  Unfortunately, with each set of x-rays, she did not show any improvement.  In fact, her conditioned worsened.

Because Miracle had such a difficult time breathing, she was unable to eat well. And, as a result she was not getting the nutrients she needed from formula.  She ate very little when we were in Burlington.  So UICH put in a feeding tube through her mouth to help her.  She was fed breast milk through Mother’s Milk Bank of Iowa to ensure she was getting the best nutrients possible.
Now that I have explained some of these details, I can go into what happened throughout the night on Sunday.  We were in for quite the rollercoaster.

Downhill

{Please note that it is taking me longer than I originally thought to write out the story of Miracle on this blog.  It is quite emotional for me, but I feel it is important for my own healing and so that I don’t forget any part of this journey.}

Sunday evening around 11pm, Miracle was not showing any improvement – in fact, her condition was worsening very quickly.  Her oxygen saturation  was only between 50-60.  This was even after they changed her to hi-flow and increased the speed at which the oxygen was flowing.  They also put in a g-tube (which goes up into the nose) instead of just having nasal cannula (which goes under the nose and has 2 prongs).  She was struggling, and was getting tired of struggling. We knew it.  The nurses told us that they could call a chaplain if we wanted, because they didn’t know that Miracle was going to make it much longer.  Rockele decided she wanted to have Miracle baptized, so we called the pediatric chaplain that was on duty.  The chaplain (Noelle)  was very kind and baptized Miracle in a very unique way.  She used very small shells, one for each of us, and after the baptism she gave us each a shell to keep.  The nurses took photos of the baptism for us to keep as well. 

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None of us were prepared to lose Miracle that evening, and I think she somehow knew this.  That night, we all stayed with Miracle and did not leave her side.  They ended up moving her to a twin NICU room so that we could have more room.  The NICU rooms are very small and traditionally can only hold one or two adults.  Moving us to a twin room allowed the nurses to put a cot out for Rockele’s two sons to sleep, and allowed them to put in 3 larger chairs that reclined. 

It was quite the emotional night.  When we first found out that Miracle might not make it through the night, I completely lost it.  I was so angry and hurt.  Why would God take this child that I have waited so long for away from me?  The nurses in the NICU were nothing short of amazing.  They cried with me and consoled me (as much as they could).  I couldn’t believe it, but it meant the world to me knowing how much they cared. One of the nurses was from my hometown and I remember telling her how I don’t know how she works in the NICU, how it must be so hard, etc.  She told me (as she was crying too!) that they usually don’t see things like this and most of the babies end up going home.  After she was baptized and they moved rooms, they finally allowed us to hold Miracle.  Several hours later, her oxygen saturation started going up into the normal range. 
This was me holding Miracle for the first time after we arrived in Iowa City.  It’s not a great picture, but I like looking at it for some strange reason.  I remember that night holding Miracle for as long as I could, but sobbing while I held her.  I knew that our time was incredibly limited, and my heart was breaking into a million pieces.

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At that time (5am?), Micah and I decided we would go up into the NICU family lounge and attempt to get a little sleep.  The family room is a place for families to stay when they don’t want to be far from their babies.  It is just upstairs from the NICU.  There are couches, lounging chairs, tv’s, computers, and even a large bathroom with a shower(!!!). This became our home away from home in Iowa City.  Micah and I slept for maybe an hour or two before getting up, showering and going back down to see our Miracle.

We knew that on Monday morning the doctors were going to do their rounds and that we were going to meet with the geneticist.  We also knew that we were going to have to make a decision that no parent should ever have to make.