Thursday, September 8, 2011

The Rory Story - Part II

Friday and Saturday: September 2 – September 3

Everything happened so suddenly. One minute it seemed as though Rory would be breaking records for getting out of the NICU early and the next we were forced to face the possibility of losing her.

Sheldon and I had gone home Thursday night after Sheldon had held Rory for the first time. I wanted to get my nails done quick Friday morning and get back to her. It sounds so trite now, but I wanted my nails nice and short because I was handling her more. Changing her diaper, wiping her face, and giving sponge baths.

Friday morning at 7:30am I got a phone call. Rory wasn’t acting like herself. She was irritable and seemed to have a tummy ache. With a sigh I relayed the message to Sheldon, saying it looked like Rory was going to have “one of those preemie bad days” and I probably wouldn’t be able to hold her that day. I went to my appointment and called the nurses a couple of times to see how she was doing. They told me they were taking her off of her feeds and she just wasn’t acting like herself.

I had planned on doing some errands before heading in, but I decided to head straight to the hospital. As I walked into her pod I was shocked to find at least eight people by her bedside. I put my hand over my mouth to stifle my cry of alarm and stood still, watching and waiting.

They finally noticed me.

“We are putting her on a higher ventilation machine. She wasn’t getting enough oxygen with the other one. We had to re-intubate her as well. This machine shakes her a little a bit to get the carbon dioxide out of her blood.” They explained

But... but... Sheldon had just held her last night with her on low-flow oxygen. I had held her for hours yesterday morning with the CPAP. What happened?

I left the room to call Sheldon.

“She’s bad.” I whispered, still in disbelief.

“I’m coming.” He replied.

The volume of people around her bed did not go down. I saw her belly, looking incredibly distended and sore. Her belly was practically glowing. The skin was stretched so tight her tiny veins looked huge. Tubes and I.V.’s surrounded her. She looked sick. Very sick. Was this even the same baby?

I’m not even sure what happened in the next couple hours. Her alarms kept going off and people were huddled up discussing things in hushed voices.

“When will your husband be here?” the doctor asks me

“He just called. He’s in Morinville. He should be here really soon.” I answer

“Can you come with me please? We need to talk to you.”

Dread floods my veins. He holds the door open and I walk woodenly down the hall with him and a nurse. As they open the door to a tiny conference room I want nothing more than to run away. I don’t want to know what they are going to say.

I sit. I can feel their sympathetic eyes on me. I’m concentrating on breathing. I don’t want to cry. Tears slip silently down my cheeks anyways.

“I’m sorry,” the nurse says, “This doesn’t usually happen so fast. And it doesn’t usually happen in babies this size. Usually it’s smaller babies.” She shakes her head sadly.

“We think it’s either an infection of the blood or an infection of the bowels. It could be necrotizing enterocolitis. I think it is something to do with her bowels because her stomach is so distended. Whatever it is, it is very, very serious. She is very, very sick.” He pauses and looks straight into my eyes. “She could die.”

His words paralyze me. I can almost feel them coming at me and I want to somehow dodge them, to somehow make them unsaid. He is waiting for a response. His eyes are kind, sympathetic, and sad. His cruel words and his eyes don’t match.

I nod slowly. He is a medical professional. It’s his job to prepare people for the worst. I risk a glance at the nurse. She’s looking at me with those same solemn, sympathetic eyes.

I swallow hard. They think my baby is going to die. They knew Sheldon was only twenty minutes away and they chose to take me in here and tell me this because they aren’t sure if she will still be here when he arrives.

There is nothing more to be said. I return to Rory’s side. Rory’s nurse, Valerie, comes to my side.

“I’m not sure what your religious background is...” she begins.

“We are Christians.” I whisper

“We do have pastors on hand who can come and perform a baptism...” she trails off as I shake my head.

“We don’t do baby baptisms.” I say simply.

They all think she’s going to die.

I cover my face with my hands and a ragged, sharp gasp of agony bursts out.

“Jodi!” Valerie calls helplessly and the nurse who was with me in the room comes and puts her arm around me.

“I’m so sorry. This doesn’t usually happen.”

I regain my composure. I leave the room to go call Sheldon again.

Frustration rings in his voice as he tells me he is stuck in traffic and he’s trying his best to get there.

I say nothing. How can I tell him what they told me? How will I ever be able to tell him?

I return to her bedside. A social services lady comes in the room. She is much too cheerful and smiley for my liking. She again mentions the baby baptism. I resist the urge to start shouting at people to shut up about baptisms. It’s like planning a funeral while she’s still alive. She sits and talks for awhile. I have no idea what she said. I remember nodding and trying to smile politely.

I’m standing by her bedside when I feel a hand touch my arm. I jump and spin around. It’s Sheldon. I fall into his arms and burst out, “They told me she could die.”

His arms simply tighten.

We wait. She is not stable. No one can seem to resist telling us how serious and critical her condition is.

The hospital staff assign a family room across the hall from the NICU. They want us close by. Just in case.

Finally around one o’clock in the morning we leave her side and collapse on to bed. I close my eyes and suddenly its six hours later. We go to her room and find she is worse than the day before. She is scarily unstable. She is very, very sick. The doctors and nurses walk around with furrowed brows and sympathetic eyes.

We are in our room talking when the phone rings. I answer.

“You need to come. She’s worse.”

“We’re coming.” I say and we run out the door.

By the time we reach her room there are at least half a dozen people surrounding her. Alarms are blaring and people are talking loudly to one another.

“Apply pressure!”

“Get me calcium!”

“She’s crashing! She’s crashing!”

Sheldon and I stand by a pillar. Sheldon locks trembling arms around me as my legs start shaking. They are performing CPR on my baby.

Oh God, oh God, oh God. I’ve forgotten how to pray. I can only repeat that over and over.

“She’s back.” Someone says. The alarms are silenced and the staff works to resume some sort of stability for Rory.

More waiting. More meetings. More bad news. More warnings. We know no one expects her to make it. We are grasping at faith with fearful hearts. I want everyone in the world praying for my baby. Surely God can’t ignore the combined prayers of believers asking for the same thing. Save Rory. Heal Rory.

Lunchtime arrives. Eating seems ridiculous, but we need to keep up our strength. We decide Sheldon will go find some lunch, eat, and then bring something for me to our room. Then he will stay with Rory while I eat.

The nurses scrub up and make preparations to change an I.V. I pull up a chair beside Rory. Suddenly an alarm starts blaring.

“She’s brading!” (*brading – heart rate is dropping – short for bradycardia.)

“What on earth?” the head nurse says in disbelief

I stand and take a step back as suddenly a team of medical staff arrives and surrounds her.

“There’s no hearbeat!”

“Apply pressure!”

Rory’s nurse, Valerie, takes a hold of Rory’s tiny chest and starts doing CPR again.

My world is spinning. Then I realize Sheldon’s not here.

I dart to a phone and am about to pick up the receiver when Sheldon comes running in. Another nurse had gone to find him. “They can’t find a heartbeat.” I tell him as we once again stand by the pillar by her bed, using it to prop ourselves up as they fight to bring her back.

She came back for the second time that day.

The surgeon from the UofA came in and put a small drain into Rory’s distended abdomen to take the pressure off and drain the icky-ness seeping from her bowels.

Saturday was a day I would never wish upon anyone.

Sunday: September 4

The downward spiral came to an abrupt stop on Sunday. Rory found her groove and started to stabilize. I held her hand while they did an assessment and for the first time her vital signs didn’t drop while they handled her.

The doctors had been afraid of kidney failure. She hadn’t peed for so long. All of facebook seemed to be praying for Rory to pee. She did and she hasn’t stopped.

A name was given for her distended tummy. Necrotizing enterocolitis (NEC). Her bowels are very, very sick. At this point they don’t know why it happened. NEC doesn’t usually happen in babies of her gestational age, nor in babies her weight. It could be her body suddenly couldn’t handle the milk (although she was almost up to 12 ml every two hours) or it could be an issue of infected blood or blood clotting that cut off the oxygen to her bowels, causing them to stop working.

They told us she needed an operation she was too sick to have. She wouldn’t survive the transport let alone the anaesthetic.

But she started to regulate her blood pressure and keep stable. At the very least, she had stopped deteriorating and was facing the right direction.

Monday: September 5

Monday brought about more improvements. Rory continued to pee, regulate her blood pressure and rely less on the ventilator. They started weaning her off of her blood pressure drugs as she seemed to be improving.

An x-ray showed her lungs and heart had recovered. Her peeing showed her kidneys were functioning.

“It’s quite surprising that her organs were able to recover if her bowels have as much damage as I suspect.” The doctor mused

Sheldon and I smile. So many people are praying for our baby girl, it’s not really surprising to us.

“She’s improving.” He admits and smiles at us.

He immediately goes into a long list of complications and possibilities and scenarios, but something has happened to both Sheldon and I over the weekend. It’s like our faith muscles had been through an intense work-out and were strengthened. We prayed for more faith and received it. When we felt hopelessness crowding in we could feel the prayers of our friends and family (and of people we don’t even know) upholding us and keeping the faith when our grip seemed to be slipping.

She’s improving.

Sheldon drew me in for a hug and whispered in my ear, “Our little girl is going to be okay.”

Tuesday – September 6

I keep hearing the words, “It’s quite surprising...” and “That’s rather unusual...” and “We don’t usually see...”

Rory keeps on surprising the doctors with her resilience and determination to keep improving.

Her belly is not as distended now, but due to the massive amount of swelling over the weekend she is blue from neck to groin from bruising caused by the skin stretching. She is the most beautiful little blueberry.

Finally the doctors have changed their tone and stopped warning us she may not make it through another day. They elude to the future. They are thinking she will be transferred to the UofA any day now.

God is working on my baby girl and I know He’s not finished yet.

Around nine o’clock that night Sheldon and I went in to see Rory. A new nurse was on duty and had just finished an assessment and diaper change.

She nonchalantly said, “I just have to go weigh the amount of pee and stool in the diaper.”

I stared at her, “Stool? As in poop?”

“Uhm, yes...”

“From...” I can’t seem to articulate anything.

“...her...bum...” the nurse finishes hesitantly.

“But her bowels aren’t working.” I reply, willing her to understand the situation.

“Oh, well, it came out when I was changing her bum and it’s probably been there all along since she was healthy and it just came out now.”

Right.

We heard the doctors opinion of this today (Wednesday). They looked surprised, offered vague explanations of that little poop being there from when she was well and just working its way out, and proclaimed it “Unusual but not unheard of.”

Fair enough. I wonder what God is up to.

Wednesday: September 7

A brain ultrasound found bleeding in Rory’s brain today. On closer examination the doctors believe Rory suffered a stroke from a blood clot blocking flow to her brain. This discovery makes them think maybe a blood clot in her abdomen started this whole mess in the first place.

Tomorrow another brain ultrasound will be done. We are praying God simply heals her brain and the doctors find an unexplainable, healthy brain with no damage.

They have told us Rory is at high risk for developmental and physical handicaps due to the stroke. For some reason this news didn’t really rock our world. Sheldon and I nodded calmly. When we discussed it later we found we were thinking the same thing.

Just one more thing for God to heal for His glory.

Thursday: September 8

Rory has been switched over to a different non-high frequency ventilator. She not only is tolerating it, she’s telling everyone she loves it. They are giving her 50 breaths per minute and she is breathing up to 30 breaths above that one her own. She’s keeping her blood pressure stable and one of her BP medications has been weaned off.

It looks like tomorrow we will be heading to the UofA if everything goes according to plan and Rory has a good night.

This little girl has changed our lives. She’s changing everything. We know God is at work in her life, but we see Him at work in our own hearts and even in the hearts of the people praying for her.

God is good all the time.

Please continue to pray for complete healing.

9 comments:

  1. I'm going to cry. I cannot imagine how scary that day was when she crashed not once, but TWICE. Thank GOD for everything He is doing for her and you and I have faith that things will continue to be "surprising" and "unexpected." In a good way ;)

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  2. Oh, thank the Lord! What an answer to all of our prayers! It is so wonderful to hear your faith sounding through your words! You have it exactly correct - God is in control! And what an awesome God he is! I can't wait to share baby and NICU stories with you! God has great plans for our little Shyla too. We heard a lot of "that's unusual", "What a fighter" and "wow" when we were up there, too. Give her preemie kisses for us! Love and prayers, Mae

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  3. Katie, Sheldon and Rory,
    You don't know me, but I know your sister Leanne through church in Mayerthorpe. My husband Fred and I had a baby boy named Wilford on June 24th. He was born at 35 weeks his pediatrician thinks (we thought 37 weeks and I was induced b/c of high BP). He came home with us 2 days after he was born, but the next afternoon he stopped breathing for periods of 30 seconds or so, on and off, and was flown back to the Grey Nuns NICU on STARS. He spent the next 2 weeks there, before coming home again. My heart breaks for you, that you have to go through this, and I want you to know that we are praying hard for your little Rory and for you both. I check facebook each morning to see if Leanne has posted an update. It was so encouraging to read your story and see your faith and God working. We will keep praying without ceasing for healing.
    Love, Hannah Madsen

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  4. I can't stop the tears that are gently falling down my cheeks. My dear kt this has been a journey of faith for so many ppl - It is beautiful and wonderful how God is bringing so many people together and healing Rory. God please continue to heal and shock and rock our faith. You are healer. Please heal Rory's brain and shock the doctors even more. Much love, nikki

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  5. Katie - I posted this on facebook and Leanna shared this: "Just read Incoherently Yours and have been incredibly touched by a mother's pure love for her daughter. Praying for complete healing for BABY RORY!"
    Stay strong, my friend. There are SO many people praying for you and your little girl <3 I love you!

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  6. Dearest Katie,
    I admire your strength. I can't even imagine what you have been feeling over the last few days. God has so many plans for Rory and for you guys. The three of you are going to change the world! Know that I love you.

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  7. I heard about Rory from my friend's facebook page. I just read your blog here and I am in tears. I cannot imagine what you and your husband are going through. I'm praying earnestly for your little family and that God would heal Rory. You are in my thoughts and prayers.

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  8. I found your blog through a friend on facebook. I first saw a prayer request over a week ago now, every morning when I get up the first thing I do is check for an update. I have thinking about you, Rory and your family constantly and praying as hard as I can. I pray that the Lord is with you and that He gives you strength and covers you with His love.

    Tears fell as I read your blog, I had a baby eight months ago and I know that you fall in love the moment you know that that precious baby is in your tummy. Babies and Mamas have such a special bond and that is why my heart is crying out for you.

    God is good and I know that He is beside you. Bless your heart sweet Katie, I don't even know you and I can feel your strength and your faith. I was just listening to "Blessings" by Laura Story and I was overcome with emotion, and broke down into prayer. I will not cease praying for you and your beautiful Rory. God bless you.

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  9. Katie,

    Nine months ago on January 3, 2011 I lost my son Bentley who was born 16 weeks premature. He lived for ten minutes before he passed away. When I found your blog on Jamie's Divine Doula Facebook page, I had to read it. I too wrote on a blog after everything that I went through. I found it helpful to read what others have went through as well.The whole time I read, I knew exactly how you felt. If you read my blog, I'm sure you'll feel the same way. I am terribly sorry to hear about your loss. I know how hard it is. I couldn't imagine going through what you and your husband did, but I commend you in fighting as hard as you could for Rory. My fiance, Josh and I decided not to put our son Bentley in the NICU. There is not one day that goes by that I don't wonder what would have happened if we did things differently. I do not regret anything that we did. I wish things turned out better for all of us but everything happens for a reason. I encourage you to read my blog, and those of others. Maybe they will help you like they helped me. Know that everything happens for a reason. Don't be afraid to cry when you need to cry, and don't feel guilty to laugh or smile when you're happy. Rory would want the best for you. We are lucky, in the hardest time of our lives, when we ourselves face death, we have an incredible happiness to look forward to as we unite with our babies.

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