Not a burden. An opportunity.

Kari McGrew: Is having a really great day. I've heard this over and over while being in Tacoma..."maybe this is taking so long because you are having an opportunity to witness to people..." Umm, ok. Yes, I hear you. But frankly, I haven't been in the mood. It's taking 110% of my energy just to keep my head above water. How in the heck could I have the mental capability to 'walk the walk, AND talk the talk?' I have big faith. What else is there...

The first thoughts out of my head this morning when I woke up were, "God. I would like a lesson today. Please pick me out of this bed and remind me why we're stuck here. I need help."

I got my lesson. I was reminded this afternoon of an encounter with a friend of mine. I hadn't seen her in a really long time, and in the months that had passed, I got right in my walk with God. Like, picked up where I left off ten years ago, and began chipping away at my baggage one by one with a vengence. It was a big "exfoliating" season for me, and I'm actually smiling right now thinking of what AWESOME things changed for the positive. One of the best things I love so very much about this friend of mine, is that we have very different beliefs, and it's ok. I can talk with her about my God, and it doesn't offend her, because I'm not "bible thumping" her....I'm just excited. And full. And it's nice to have that person (that has seen me at my very worst,) take note of the change in me without feeling the urge to prove it to her. I felt so supported, hearing her say, "Whatever you're doing, keep doin' it. I'm really proud of you."
I don't have to take this time in the hospital to witness to people. It's not always about that. And it's not about big faith today, because I already have that too. It's about being fruitful all the time. I am so in love with my creator that it affects people....not because I'm knocking from room to room..."HEEEEY, WOULD YOU LIKE TO KNOW ABOUT JESUS????"...it's just in being present. I AM affecting others in the way that I react to this situation. Doctors say I have a good attitude, but I think they know it's something more. My hope is not in them, and I'm not sure if they're used to seeing that. I am thankful and I have joy, even when I'm sad or fighting off some crazy spiritual warfare. What a great lesson today. I was hoping for a pep-talk with the way I was behaving and feeling inside. We've been here a long time. I'm missing a lot of things right now, and it's really gotten me down. BUT, instead of being reminded of what I need to be doing, I was reminded that I'm doing something right. Swimming in grace today was exactly what I needed. Thanks God. You turned this burden into an opportunity, even when I didn't want to. :)

And Jones, thank you for always being there. I love you girl.

Are we there yet? Are we there yet???

It's been a busy week. Joel is doing so good!! His methadone/ativan wein was started back up a couple of days ago, and he's responding amazingly from his trache....(yes, I know trach doesn't have an 'E' on the end. I don't care, it doesn't look right spelled that way.) His amiodarone dose was lowered last night, and with his heart acting the way it has in the past, I'm a little nervous. Hopefully he'll surprise me, and we won't have any weird stuff happen. He's gained over a half a pound in the last week. Adam and I have been super busy finishing up our training for Joel's care. It's a little intimidating. I know that we'll be just fine, and we won't allow ourselves to be prisoners in our own home...but for the time being, I'm waking up in the middle of the night reminding myself of things I 'can't forget once I get home.' HAHA The life of a mom, right?

So, in the next couple of days to a week, we'll be working mostly on his feeding & the vent issue. Most likely, he'll go home with a feeding tube placed in his tummy. Yesterday he had a procedure done to decide whether it will be placed into his stomach, or his small intestines....Joel has pretty bad reflux, which is why we're all leaning more toward the lower tube, called a GJ tube. It's possible that Joel will get his feeding tube tomorrow. We'll see.

Here is our only issue right now, and one that needs prayer. The vent. Because we live in a small town smack-dab between Seattle and Portland, we can't seem to find a vent company that will supply a vent in Chehalis. Care Medical said yes at first, and then changed their mind. This completely baffles me. No doubt there are other trached kids outside of large cities...so why the problem? The discharge coordinator, our social worker, and I are working super hard to figure it out. We've called every company we know of in the state of Washington. This can literally keep us in the hospital until we get one, and we have 6 nurses waiting for work....please pray that the vent and nursing staff fall into place quickly. Our goal is to be home by Connor's birthday on June 17th.

To trache or not to trache...is not the question.

Looks like it's time for me to get my game-face on. While I was writing my last update, I almost included the trache possibility, but I was trying my best not to make room for that. Joel did amazing on CPAP for the first 24 hours. After that, he was having such difficulty breathing, that he was actually losing weight, which is the opposite of their main focus right now. I can't remember if I've mentioned this before, but Joel also has a partially paralized diaphram on the left side. That played a big part in the amount of work it was taking him to inflate his lungs properly. Withdrawls did too. Sunday night when I called, Jesus the night nurse...(yes, really...his name is Jesus...) said that he was doing a little better. So, yeah, I was a little surprised to walk in and hear that in front of the 20 people present at rounds yesterday morning. It's not that I didn't know it was a good possibility, I just thought we were turning around.

I'm handling this as well as I hoped I would, which is great. When they intubated him, I cried, but only because he stopped crying. I miss his voice. I miss his face not having tubes shoved into it. There was comfort seeing his eased breathing afterwards though. He was able to sleep for longer periods of time, more comfortable. I though, was bombarded by people. I've gotten more familiar with the staff than I ever envisioned, and periodically they'd stop by to check on him and ask how I was doing...assuming I'd be dissappointed. It was hard not to cry when they're so caring. This is the truth: I'm not dissappointed. It's taken me a full day to not feel like I'm on the verge of giving in to worry though. Having a cardiac baby means that your life as you knew it will be different. No prob. Handled. Having a cardiac AND neuro baby with a trache is a different picture all together. There will be a nurse in our home for 24 hours the first three days, and after that, 16 hours a day. First thoughts: "How am I going to be able to run around the house naked, speak my mind, and have any private moments with my husband..... without being exposed?" There will be equipment in our home running 24 hours a day. There will be training for Adam and I to learn. And the biggest change, the only one that I'm feeling anxiety about, is the affect this is going to have on the other children. That is the most challenging idea. How do I incorporate this new lifestyle into our old one, without the other kids getting the crappy end of the stick?

I know this is cliche...but God doesn't give me more than I can handle. Even at our worst moments in here, I never felt like, "I can't handle this stress." I just knew to put one foot in front of the other. So, my 'A-Game' is getting the kinks worked out. I want what is best for Joel to get home the quickest, and this is it. Our family will be together soon, and until then, I need to keep my head in the right place. No time for selfishness. I'm the Queen of my household, and that's what we do, right ladies? We "GIT R' DONE." :)

Sign that you've been in the PICU too long #436: Get a ride to church with Joel's intensivist's wife. :)

JOEL UPDATE:

So as you know, Joel was weined off the ventilator this week, and transitioned to a CPAP machine. This was a HUGE accomplishment! It looks a lot like scuba gear, and Joel pretty much hates it. The plan was to have him start with doing 1-hour cannula trials (I posted a picture of him with the nasal cannula this week) and then increase trial times from there. He did well on the first two days, but since then he's been having troubles tolerating even breathing on the CPAP.

One of the possible "causes" of the respiratory problems could be that they restarted him on his methadone/ativan wein. Joel was on pretty heavy narcotics for a month, and again for short periods of time for each procedure. Methadone is a medication they use to help with the withdrawls from his pain medication, fentanyl. Ativan is used to help wein him off versed, his sedation medication, but also used in conjunction to help prevent seizures, which he has had from the brain bleeding. Breakthrough withdrawls have been pretty tough for him. They adjusted his dose accordingly this morning, and his oxygen saturation levels and respiratory rate have improved. We are hoping that they continue to improve throughout the night and tomorrow so he can restart his trials. This would be a great prayer topic... :)

Joel also got immunized this week, and weighed in at 7 lbs, 8 oz!

In the next couple of days, speech therapy will be conducting a swallow study to see if he will be able to take food orally. He can suck on a binky, which is a good sign, but it has to do with being able to suck, swallow, breathe, and not aspirate his food. I'll give you guys more updates as I get them. Thanks for reading, and for the prayers!!! XO

Hypocrite

I have all of these thoughts in my head, and I'm afraid I've had too much coffee to get them out eloquently. I'd like to say that being in the hospital for 8 weeks would consume so much of my daily focus to cut out all of my other stresses. I wish I could. Unfortunately, the world does not stop turning. Bills still need to be paid. Children will miss being at home. Relationships need attention regardless of health status. The show must go on. Add this to no sleep, and guess what I've given myself...a freggin meltdown.
Adam and the kids came up to visit for this last week during his vacation. I tried my best to be attentive, but gradually my patience and "mom duties" were unmanagable. It was so hard to tend to boo-boos and tantrums, and schedules and mealtimes, and ni-nites....every second with them was a second missed with Joel. Every second with them reminded me that my life right now is not normal. There should be four children with me, and at the park today, there were only two. Mentally, I was a mama-dog, who feels uneasy and worrisome when her puppy is missing. It didn't take long for me to find something wrong with everything and everyone.

And then just before we said goodbye, Adam and I sat outside and let the kids play in the yard. Another couple and their son came outside too, and it wasn't long before we were sharing PICU stories. Their little boy is a cardiac baby too. Same doctors, same surgeons, same nurses...only, the way she described them and spoke of them was completely different. It was like our kids were in different hospitals. She had horrible things to say about the cardiologists. She had issues with every nurse except for one. Not one person in the department has (apparently) given her the attention or service that she deserves. She ranted and raved about everything under the sun...all the while making references to her "christian lifestyle." I sat there listening for 45 minutes....trying my best to turn her negative comments into positive ones. That didn't last long. I'm not going to lie, people like this FRY MY ASS. Do you really think it's a coincidence that this lady has problems with everyone she meets? I think not. I got the heck out of there. I saw Adam and the kids off, and went back up to see my little man.
When I sat down, I had a few minutes to breathe and think alone...(finally!) My thoughts ran back to my encounter with the crazy mom from room 795, and I said to myself, "Geez lady, If you were the Christian you claim to be, why aren't you sitting back to let God take care of business??" And the light above my head clicked on. I feel so awful. Here I am, with this horrible negative attitude...mad at my mom, mad at the world, mad at our finances, mad, mad, mad. Worry, worry, worry. And what for? Here I am, chastizing this poor woman who is going through a worse crisis than I am....and I'm just as much a hypocritical christian as she is. Why am I letting this crap get the best of me? Because I'm attempting to take on all of the things God can resolve effortlessly.

The show must go on. I need to get some sleep. Attitude adjust.

Looking Up

Rounds, 8am. I like being there...it's nice hearing staff talk amongst themselves about your kid. All of the things I hear daily and forget, I am reminded of. I was there this morning, coffee in tow, and I couldn't pin-point my enthusiasm to the source until I got back to the elevator. We had a good week. A solid good week. Looking back at month one, I am amazed at the positive thoughts I had during rounds..."well, he's improving here, or well, he'll get past this, he's just had surgery...or, God, I think we need a little help today." I remember my faith. I wonder if the staff thought I was ignorant. I remember trying to holdfast through the mornings, because it came like clockwork. The "afternoon news/evening news/middle-of-the-night news" was bound to be a kick in the gut. Heart surgery, brain bleeds, CO2 levels, hydrocephalis, stroke, blood clots everywhere, arythmias....shunt 1, shunt 2... Holy cow. We made it through that. We can make it through anything. My baby boy is 2 months old tomorrow. I can't believe we've been here for 2 months. Again, looking back, in hindsight, it feels like someone threw us in a funnel. The only way out is through.

"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness...The Lord is good to those whose hope is in Him."

Lamentations 3:22-25

You are going to run, and jump, and laugh, and play, and LIVE. You will LIVE Joel. You are God's gift to us, and you were made perfect in his image. And we are so thankful. Thank you Jesus for orchestrating my son's healing.

For the healthcare workers of the world:

Just overheard this outside Joel's room: Intensivist: "Hey Wendy, have you met the parents of this little one? Normally I've had a chance to talk with mom or dad by Wednesday." Nurse: "I met the dad yesterday, but not the mother. I think the dad is working and the mom has a sick kid or something."
There are some things you only learn from experience. This would be gut-wrenching to witness this as a nurse. I'm going to give the benefit of the doubt to this particular child's parents and hope that something serious is keeping them from being at their infant's bedside. I get stories from nurses and RTs...very vague of course, they keep their confidentiality codes, but they sadden me. Just in the 7 weeks that I have been here, I have silently seen it. Kids with no parents. Nurses holding babies. Nurses consoling toddlers who are alone in their rooms. Here's the tear jerker for me....a nurse told me that it's the worst when the kids are left alone and DON'T cry. When they don't get upset, and they don't ask for anything. She said, "It becomes easy to spot a neglected child. They are satisfied being alone."
An RT told me one day that about half of the kids in here don't have parents that stay with them. About half. Most of the kids I've seen are here for less than a week...trust me, I keep track of the people who are in and out of this place, I'm patiently waiting for our discharge. He said that after 48 hours of no contact or check-ins, they call the parents to give them updates. Can you imagine how scary it would be through a child's eyes: cords, monitors, bells & buzzers, different people coming in and out of your room, the toddler screaming bloody-murder in the neighboring room, and no one to comfort your fears?
It takes a special kind of person to work in a pediatrics unit. Adult patients are self-centered. Children are innocent. Not that anyone deserves to be hurting, but it seems more heartbreaking when they're too little to ask, "why me?" A healthcare worker that sees this on a day-to-day basis, kids in pain...I think they have bigger hearts than the rest of the world. I tip my hat to them. If you see a nurse today, please give them a hug from me.

The Sleepover

Yesterday I left the hospital for an overnight stay in Gig Harbor at my aunt's. It was meant to hit three birds with one stone. I would get to see Mia for longer than a usual visit. I could relieve Ralph from juggling work and a two year old while my aunt was at her doctor's appointment. I would test my anxiety of actually leaving the hospital grounds overnight. If I had a nervous breakdown or something happened to Joel, I was a close fifteen minutes away. If worse came to worse, I could hitch a cab.

I was set. The charge nurse let me pick the night staff so I could rest in the fact that someone familiar was taking care of him. It was the optimal time for me to leave if I was going to. He'd had three good days in a row. It was now or next week, so I hopped my ass on a bus, made it over the Narrows, and the sleepover began.

Mia was asleep when I got there. I don't think it would matter if I had 1 child or 30. Hearing Mia wake up from a nap is as much fun as it was when Connor was a newborn. I'd hear him rustling around in his crib, and it was all I could do to keep from sprinting down the hall to be the first one to greet him. Happy and well-rested, their smiles remind me of why I choose to stay home with my babies. We had a good time. We played tea, built duplo towers, and snuggled up watching Nemo until it was her bedtime. Just by watching my little girl in action, I'm puzzled; she's almost a different person. I've missed so much, and it hasn't even been...oh wait, it's...May 4th. It's May. I had my baby in March...I should be home right now. I should be home, no. WE should be home.

As I requested, the nurse texted me his vitals at 4am. They were great; everything was fine, but after that I had to remind myself not to panic. Remind myself that I needed to do this. Continually refocus my thoughts upon the memories I was trying to make with my daughter. Practice what I preach; "be" where I am. Repeat.

I did this to see whether or not I could manage going home for a night, and I found my answer. I will go home for a night- when I can take him with me. :)

Got to hold Joel again today for an hour. He fell asleep within seconds. :) The top of his head has betadine on it from the intensivist tapping his shunt this afternoon. I know, it's a little scary looking, but they have to tap it at least once a day until they replace it with a permanent shunt because it isn't working correctly. Enjoy the pics! XO

"Mommy-High"

You know those segments in the movies when a person dies and all of their most spectacular memories FLASH before their eyes??? I had one of those tonight....one I will remember for the rest of my life.



It took me by surprise, Joel had thrown up on his bedding, and it was supposed to be just a quick wipe down, change bedding, done. The RT suggested that I could hold him if I wanted, and I took off my shirt incase he threw up again while I was holding him...



This is what I can only imagine it is like after birthing a child naturally...you know, when they put your baby up on your chest...(with a few minor adjustments, involving cords, and tubes, and no labor.) Skin on skin. Baby to mama. A "mommy-high". It was like immediately those 7 weeks of separation between us meant nothing. We were together again. That unity...it's hard to find the words to even describe it in a way that would do it justice. I got to hold him for an HOUR like that, with the two of us together, and I knew it. My son knows who I am. He knows EXACTLY who I am...and he loves me. He totally loves me.



I love these little pieces of heaven I get in here. Moments of lucid through all of his narcotics, when he looks into my eyes...like, "mom, i'm still here." Or, tonight. Holding him close to me, on my chest. He literally "melted" into me. It made up for every heartache I've had in here, times a hundred. I feel God's presence. Tell me God's not real,....tell me I'm making this up. If you could feel what I feel, if you could experience what I have in the last 7 weeks, you'd be a believer. He IS real. He is big. So big. Those little times I get in this room, during all of this chaos,...he's reminding me that he's been RIGHT HERE at my side.