Setback

img_3124This week was a wild ride. Elijah was extra fussy Monday and Tuesday to the point that it seemed like he was in pain. I didn’t want to overreact, but I finally called his pediatrician. She agreed to work him in. After poking around on him and a few blood tests, we were admitted to the hospital. While I was in tears as they admitted us, I was so thankful she was cautious and recognized the seriousness of our son’s previous surgeries.

Elijah stayed fussy all that day and the next, and they finally ran a CT scan. Taking him to a surgery prep room to put him under had me in tears, again. After these tests, we assumed we’d be spending one more night recovering from the anesthesia and then head home in the morning. Things change quickly in a hospital.

The doctor came in and said his CT scan was clear, but his blood levels were concerning. She had spoken to UIHC, and his surgery team wanted him back. I couldn’t believe this was happening. I had to watch them load up my son and take him away in an ambulance again. Heartbreaking.

To make a long story short, we met with one of the surgeons within minutes of arriving at UIHC. He put me at ease immediately. He spent a good amount of time with Elijah, poked around on him, and explained things to John and me in great detail. They ruled out all of the serious issues that could have been infections or blockages from the previous surgeries. That left them thinking it was probably just a virus that was on its way out. After another night in the hospital and more tests, we were cleared to return home…again.

I can happily report Elijah is smiling again, and we’re doing our best to remind him this is his home. Thank you for your continued prayers for our son.

Elijah: One Month

Even though it feels like I was in labor a million years ago, it’s hard to believe Elijah is a month old. 

We love when he is awake because we can’t get enough of those eyes! 

In case you hadn’t already guessed, he looks just like his dad did as a baby. 

Caution or Confidence

I’ve blogged about Father Mike Schmitz multiple times. If you’re tired of hearing about him, I suggest you download one of his podcasts and see why I’m so enthusiastic about his messages.

I listened to his Easter homily while I went for a walk last night. Shuffling along the sidewalk and plugged into my phone, his words brought me to tears.

John and my family may be the only ones who truly feel this message. Father Mike’s words kept flooding my mind with memories of that Saturday night when we gathered together with the surgeon in prayer after a grave diagnosis for our son.

I honestly felt the Holy Spirit tell me to ask the surgeon if he would pray with us. In that moment, I’m not sure of the words that were said. I only remember asking God to give us a chance to raise our son as His servant and praying the Our Father. The rest is a blur, but I truly felt God’s presence in that dark room.

In the conversations that followed between John and myself, we struggled with asking for a miracle and just trusting in God’s plan. We knew God picked us to be Elijah’s parents for  a reason, and we were ready to love him no matter what was thrown our way. At the same time, we knew deep in our hearts that our God is a healer and He was hearing our desperate cries to make our son whole.

This podcast helped me see that in the moments where I put my entire confidence in God, I wasn’t asking for too much or being ungrateful for what we already had. I was trusting God’s plan and truly living the way God instructs when he appears to the apostles for the first time: “Be Not Afraid”.

Father Mike said, “God does some of his most greatest stuff when things are absolutely hopeless and the only reasonable attitude is fear. But God says, ‘No, Be Not Afraid’.”

“Christian Hope is trusting not just an outcome but in a person, Jesus Christ.”

As I go forward in life, I want to live each day with the confidence I felt in God that week. A confidence so strong that I felt comfortable handing my son’s future over to a plan bigger and better than mine. I know this experience will help me live out the message of mercy and “Be Not Afraid”.

Link to Heroic Confidence: Caution or Confidence Podcast.

Fruity Rice Krispy Treats

img_3035Who doesn’t love Rice Krispy Treats?

Thanks to Pinterest for another non-chocolate win in our house. The standard Rice Krispy Treat recipe calls for six cups of Rice Krispys. Cut this to three cups and add in three cups of Fruity Pebbles. Everything else remains the same.

INGREDIENTS:
3 tablespoons butter
1 bag of marshmallows
3 cups Rice Krispie cereal
3 cups Fruity Pebble cereal

Yes, I ate these for breakfast.

Picture Post

img_2827img_2844

img_2837I didn’t have an opportunity to post photos from when people visited Elijah pre-NICU. Here are some favorites including my parents, my brother Matt, and Elijah’s cousin, Seamus.

In addition to my blog, I want to do some sort of baby book. My initial thought was Shutterfly books every year (plus one for just his first three weeks of life since it was quite the journey). However, I received some memorable items including crafts Elijah did with the NICU nurses (seriously, those nurses are so crafty!) and cards people sent while praying for Elijah. I want these kept somewhere other than in a box only his mom looks at while cleaning out the storage room every few years. Any suggestions? How do you document milestones for your kids?

Home!

img_2998img_2997We graduated from the NICU! Yesterday we finally introduced our son to life outside of a hospital. At three weeks old, it was overdue! The best parts about being home…

Not getting in my car and driving 40 minutes to see my baby! (Plus the parking ramp and actually getting to his unit) 

No cords, wires, or beeping alarms while trying to hold my son!

No hospital gowns or gloves! 

Endless opportunities to snuggle!

Not notifying a nurse when it’s time to feed my son!

Elijah can wear his own clothes!

Stroller rides and fresh air! 

Eating meals that are not prepared by the hospital cafeteria! 

I have nothing but praise for the doctors, surgeons, and nurses we interacted with the last three weeks, but bringing our son home is a dream come true and a huge step on our journey. 

Swaddles and Snuggles

img_1753We weren’t allowed to hold Elijah for over a week. During this time, he was placed on a heated hospital NICU bed with his arms above his head and his legs stretched out. Most of this time he was sedated from surgeries, so he didn’t move much. (I have photos of this time period that I’m willing to share in person, but his open stomach is too graphic to post.)

Day after day, I wondered if he’d ever want to be swaddled or snuggled. I feared his stomach incision would keep us from placing him on our chests, and we’d never get that cuddle time we were craving. What mom doesn’t dream about placing her baby on her chest and inhaling that img_2971new baby smell?

Thankfully, Elijah is helping my heart mend, and he lets me swaddle him (arms out). His incision doesn’t seem to bother him, and we can finally place him against us. Love!

We are stuck wearing protective gowns due to a virus outbreak on another NICU hall, but I’m thankful I can rub my face on Elijah’s soft head and inhale his therapeutic scent.

Food, Finally! 

 
After 13 days of only IV nutrition, I was finally able to feed my baby! He was only allowed a few drops the first day, but his stomach processed it normally. They have continued to increase the amount each day, and today they gave him permission for as much as he wants! It looks like the surgeries worked!

Praise God!

The teams of doctors and surgeons are both talking about “getting Elijah home soon”, and we love the sound of that plan! 

God’s Miracle Man

Naming a child is a lot of pressure.

I loved reading your responses to how you knew the name you picked for your child was correct. Your comments made me smile over and over again. Thank you!

While John knew from day one that our son should be named Elijah, I wasn’t so sure. When I came home from school one day and got the mail, a package was addressed to me (no return address).

Inside was this book, Elijah: God’s Miracle Man. I sat down and read it, crying the entire way through. John came home during this time and told me he had ordered it for me to learn more about Elijah.

It helped convince me that this Biblical name was the choice for our son.

Little did we know this title would become part of our daily prayers in the upcoming future.

On Easter Sunday, John and I made a quick trip home to grab more clothes before heading back to the Ronald McDonald House, where we stayed for four nights. On that holy night, I took this book out from my nightstand. Between tears, we read this book together again and were reassured that Elijah is our little miracle and will keep fighting. The book says “God took care of Elijah in the loneliest of places.”

It’s so hard to leave our son every night. I have to believe God is taking care of Elijah while he’s in the NICU, a lonely place for him. We want more than anything to have him healthy and home, but we are forced to be patient. It’s so difficult. Some days are worse than others, but his name gives me strength.

Elijah: Week One

img_1664The best experience of our lives was followed by the scariest.

Friday: 11:56 p.m. Elijah is born!

Saturday: 6 a.m. the nurse comes in to give Elijah a bath and notices green spit up.

Elijah continues to spit up green bile throughout the morning while meeting lots of family members.

By early afternoon, we are in the NICU and head for x-rays and scans in the main hospital.

Three hours later, we are praying my doctor discharges me so I can ride with John to UIHC. We frantically pack up the room, sign the discharge papers, and follow the ambulance to UIHC.

Elijah is in surgery around 8 p.m.

Somewhere around 11 we receive news that his intestine was twisted and his bowel is completely dead. They discuss removing his bowel, putting in an ostomy, and using an IV through his neck to receive nutrients. The possibility of him ever eating on his own is unlikely. The surgeon is certain he will need to remove some of the bowel, but he wants to let Elijah’s intestines sit for 24 hours and see if there are any improvements. They left his stomach open rather than sewing it back shut.

Just before midnight, we are prepped in a conference room for what Elijah will look like when we see him again. His stomach is open with plastic covering his organs. We can see directly inside of him.

We finally see our son just before he is 24 hours old, and our hearts are breaking for him.

Sunday: Elijah goes back into surgery, and 11 centimeters of 150+ are alive. The surgeon leaves his stomach open and wants to give him another day before removing any bowel.

Monday: John and I sit by Elijah’s bed and pray for a continued miracle while still placing our trust in God’s plan.

Tuesday: Elijah is taken for surgery again. All but three centimeters are alive! The surgeon removes his appendix and leaves the stomach open for another two days. He plans to go back in one more time. If he has to remove any portion of the bowel, he’ll have an ostomy, at least temporarily, and possibly still an IV for nutrients.

Wednesday: John and I feel more anxious than the previous surgeries. We feel guilty asking for more when we have received so much great news already, but we continue to pray for the best outcome for Elijah’s overall quality of life.

Thursday: All of the bowel is pink and alive. Blood flow has returned to the entire intestines. The surgeon feels optimistic about the outside of the organs but the insides are still a mystery. He isn’t sure how long the process will take for Elijah’s intestines to work fully and on their own.

Friday: John and I thank God when we finally get to change dirty diapers. The surgeries are working.

The road ahead is long, and we are unsure how many weeks Elijah will be in the NICU. He is still sedated since they need to let the incision heal, but he is waking up more and more. He hates the tubes and IVs and aggressively tries to pull them out. He is slowing being taken off of a ventilator, and we’re counting down until we can hold him again.

Happy one week of life, my precious child. Thank you for being a fighter!

I’ll always be there to hold your hand.