crikets-song

[crikets-song]

I Wasn't Ready

In raw emotion at the earliest hours, I cry to the dark. Little boy laying on my chest, breathing and sleeping peacefully as I read a text saying my last grandparent has passed away only moments before.

Suddenly I think of her early morning walks during the summers when I would visit.

I can hear her laugh.

I can smell the breeze and the dinner she's making, the sounds of the evening news, the locusts making their August songs.

There she is, sitting in the kitchen with the neighbor lady, talking about church and gossip.

The tomatoes are ripening on the vines she planted. She's scouring the leaves for the red ones, while impatiently picking a green one here and there.

A day isn't complete if she hasn't gone to the store for something she forgot.

Grandma survived scarlet fever. The dust bowl. The Depression. World War 2. Illnesses.

Four kids. Seven grandkids. Eight great grandkids.

She writhed in the last week, continuously unaware of what to do with herself, slowly forgetting people, actions, breathing.

She fought, stubbornly, because that's who she is and was and always will be until her closest family dies away too and her memory, and ours, are nothing but words thrown down on paper, ancestors on a family tree.

I thought I was ready to hear the news, but I wasn't. It hit like a cold wind on a pleasant spring day. My heart, beating in time with the heart of this little boy sleeping on me, skipped and broke. A little piece that was always reserved for this grandparent.

I have to hold on to the hope that we're all worthy of seeing each other again. I dig my nails into this hope, clawing at it as if my life depended on it, because it does in a way.

I need the quiet Father God, the Lord Jesus, to whisper to me in the dark that it's going to be okay. But in my grief I am temporarily deaf.

6/16/22

#stages of grief #prayer #coping with grief #death and dying

[crikets-song]

It was the longest year, it was the shortest year

Thank you to everyone who has prayed for James, who continue to pray for him, and to all those out there who keep up with his story.

------

Here we are, one year later, with a little boy who is thriving after two open heart surgeries. A year of tears, laughter, frustration, joy, excitement and anxiety have led to this and every other moment hereafter.

I've taken the day off and I'll spend it with James. I'll write the first birthday letter, which is a tradition I'm starting, detailing the year and what he's accomplished, what I hope for him. One hope is that he will appreciate these letters as a yearly diary of sorts, showing him how far he's come and how loved he really is by us.

A year ago I wasn't sure we would even get to this point, but we have, and I thank God for that.

My heart celebrates today, but it's also sad. Roughly 1,500 miles away, my uncles, aunt and mother hold vigil over my grandma who is slowly making her exit from this life. I'm torn, wanting to be there and wanting to be here.

Grandma's hand is being held throughout the day by one of her four kids, trying to make her comfortable. Plans are being discussed for her service, taking into account everything she said she wanted. My mum and my aunt are fighting over how care should be given, both retired nurses who just want what's best. Since mum is the durable power of attorney, aunt doesn't have much choice but to go along with what's being decided, though not without an argument for every medication or discussion of comfort. They've never gotten along and I always knew things would unfold like this. I just hope grandma isn't aware of it and that both mum and aunt have the decency to fight elsewhere.

Today I'll focus on James, giving thanks for his small body, big presence, and valuable life. I will save my mourning for tomorrow.

💙💚💙

6/10/22

#prayer #prayer for healing #pray everyday #pray without ceasing #chdawareness #heart warrior #congenital heart defect

[crikets-song]

How's our little baby James doing? Well, I hope x

Thriving! Thank you for asking! Hopefully I can update soon. He's an active little guy, so he's keeping me on my toes! ☺️ 💙💚💙

4/20/22

[crikets-song]

Post-Op and 7

December has passed, a new year started, and the first week of that new year meant surgery.

James had his second open heart surgery on January 6. We got to the hospital very early, expecting to be the first case of the day. Unfortunately, an emergency in the ICU bumped us to a later time, so we spent some hours with James. I won't ever complain about extra time before a procedure. You never know if it will be your last and if God is just giving you a little more time. That's how it was with my grandpa before his last open heart.

Noon rolled around and I wasn't quite sure we would have the surgery that day, but anesthesia came by and told us they were going to get started soon. One of the anesthesiologists gave us a few minutes for kisses and snuggles, then scooped James up and carried him off. I cried. How could I not?

I asked during our pre-op visit if we would ever know if something went wrong. The hospital uses an app to communicate with parents/caregivers during surgery and I was told that a message would come saying the surgeon wanted to speak to us. I hoped never to get that message.

James' surgeon explained the surgery to me, and for all the times I've had it explained, it's sunk in and I finally understand what happens. He said that if he went in and didn't think the procedure could be done, he would just replace the shunt and close James. He didn't think that would happen, and he expected to take the shunt out and do what he planned to do.

Four hours into the surgery, we had a text saying the surgeon wanted to see us. This was my worst fear. We'd gone back to hospital housing during surgery but as soon as that text came I rushed back to the hospital with husband.

We waited and then saw the surgeon, who was super happy. Not something I expected. He was very very happy with the procedure and said it went beautifully.

Hallelujah!

The text we got was just the text before the final ones, and he just wanted to tell us it went well.

Sighs of relief all around.

James made it back to the ICU and woke up soon after we arrived to see him. As soon as he saw me he tried to roll to me. Bless his little body, that couldn't have been easy.

He turned 7 months old the day he got out of the ICU and went to step-down. I quietly celebrated to myself, knowing that every month has been difficult, but I'm so thankful.

James won't have to have the third procedure until he's closer to three years old. It's a long time from now, but I know it will go quickly.

I'm thankful for prayer warriors like those of you who have kept up with his story and think about us. I'm thankful for the skills of doctors and nurses. I'm thankful God gave us people who help us through the hardest times.

💙💚💙

1/22/22

[crikets-song]

Surgery Eve

Tomorrow is James second open heart surgery. We spent today in pre-op appointments and running to various departments in the hospital. The final meeting of the day was with the surgeon, who I like very much. He did James' first surgery and he openly said that this next procedure should be better than the first, but if he's not comfortable doing what he needs to do, he will back off and just repair the shunt.

The Glenn Procedure is taking the major artery and bypassing the entire right side of the heart, directing blood straight to the lungs. I've gone over diagrams enough times and focused so hard on what doctors were saying that I believe I have a firm grasp on what will happen tomorrow.

I've been snuggling this little boy as much as possible. I've had to really try very hard to tell myself that this absolutely has to happen. Not having the Glenn, or even a shunt repair, is not an option.

I learned today, though, that all future vacations will have to be planned around the nearest hospital with pediatric cardiac surgeons. That any illness can't have a delayed doctor visit. Normal illnesses for kids will not be normal for James.

I'm tired and just so sad. The surgeon asked how I was doing and relayed a story to me from another mom he'd just worked with. This woman had done three tours in Iraq as a soldier, and yet she found having her child go through similar surgeries more traumatic than war. Enough to trigger her PTSD. The surgeon said PTSD would be a normal reaction for me based on our time there, and I admit I've wondered if I have some. The story certainly made me feel valid in my current emotional state.

It's going to be an early morning. I just hope I can sleep.

💙💚💙

1/5/22

#prayer #prayer for healing #pray everyday #chdawareness #pray without ceasing #heart warrior #congenital heart defect #pray for me

[crikets-song]

First Celebrations

On December 19th, we celebrated James' first roll. I was in the kitchen and I'd left him on a blanket on the floor in the living room. He hasn't been real mobile so it was a safe space for less than a minute. Walking down the hall I came in just in time to see him roll from his back to his tummy. What joy to witness that at just the right moment! I called husband and we rolled him to his back, and he immediately did it again. Sweet little one!

Christmas. It was uneventful, but it was his first and it was nice. He received so many gifts from our family, and I enjoyed snuggling him and napping myself.

We are one week away from his next open heart. It was scheduled for January 5th, but I believe it's being pushed back a day. It hasn't been confirmed yet, though. Whatever time we can have with him outside of the hospital is welcome.

I suspect I have some sort of hospital PTSD. When I was discharged after his birth, I was left without pain medications post C-section because the pharmacy couldn't find the doctor to confirm authorization. That pain, combined with my newborn going in for major surgery and then spending three months with him in hospital has left me drained. Every time we have to go in, my anxiety goes up. The pains in my stomach and chest begin, I get restless, etc. But I stay because I don't want him to be scared. He's only six months old, but I know he feels things when we aren't there, and I don't want that sticking with him for the rest of his life.

I'm so nervous about this next one. So scared. I'm trying not to dwell on it.

Our heart brother back home, William, is scheduled for his own surgery in March. On my birthday, no less. My candles and prayers will be dedicated to him that day. I told his mama that March 4th is the only day of the year that tells us to keep going, so what better day to have a surgery?

I'm so tired, having tasted a bit of actual sleep last weekend. But we just keep going, like the calendar says every year on my birthday.

12/29/21

💙💚💙

#prayer #prayer for healing #pray everyday #pray without ceasing #chdawareness #congenital heart defect #heart warrior #pray for me

[crikets-song]

Baby William: Update

From his mother:

Today has been a crazy day of emotions. William had a successful CT scan with anesthesia. Initially, the doctor said no cath tomorrow as there is beautiful blood flow to the lungs. We did repeat a lung scan that showed the perfusion is much better than a couple weeks ago. Prior to discharge, however, a practitioner came by our room and said the doctor will be in shortly to go over things. Odd since we already talked to him. It was to tell us the concerns found on his scan that he didn’t see until after. The airway going to his left lung is compressed somehow or the tissue is extremely weak and soft. The way to determine what is going on is a bronchoscope. He has called the providers who do those and called our surgeon to see if we can get in for a bronch this week before we leave. It’ll be up to the other providers if they will do the scope this week. The repair, if it is compression, is a surgery. It’ll replace the conduit, move the conduit slightly and add tissue to his arteries as to allow more blood flow to his right lower lung- which was ballooned a year ago. The scope will also tell us if the compression is constant and repair would be needed in a couple months or if we could wait 6 months. Lots of information and sorry if it doesn’t make total sense.. for now we are going to enjoy our time together.

As of this afternoon, William is going in for the scope, but I haven't heard anything yet. He continues to fight a cold as they do these labs and scans, and.they don't typically do a lot when kids have colds, but his case is serious enough. His family is tired, he's tired, but they all keep going. It's all anyone can do. And he's a happy kid overall.

His specific heart case is very complicated and I've seen another nurse comment that this type of heart problem doesn't end well (she didn't say this to his mom, just in another group that discussed a similar case). I hope and pray this person is completely wrong and William grows up with his twin sister and older brothers, as well as his heart buddy and my son James, to be soldiers in God's Army.

💙💚💙

12/8/21

#prayer #prayer for healing #pray everyday #pray without ceasing #chdawareness #congenital heart defect #heart warrior #pray for me

[crikets-song]

James and William: Updates

I logged on to Tumblr to find such a response to my previous post. Thank you all so much for your continued prayers and thoughts for both James and William.

James had his pre-op cath lab visit and MRI a few days before Thanksgiving. The results showed that things are progressing as expected and his surgery is still on for the first week of January. A couple of things the doctor saw:

1) James' clot in one of his major vessels has shrunk, but it has calcified and moved a little. During the cath lab, the doctor didn't see it, but after radiology checked, they found it was still present. This means husband and I will continue past the 12 week mark in giving James a shot in his thigh, twice a day.

2) The upper pulmonary vein has narrowed and will have to be worked on during the next surgery. It's rare for this narrowing to happen, but not completely out of the realm of possibility when kids have cardiac issues. It will just be another part of the next procedure.

We left the hospital the day after the cath lab and spent Thanksgiving at home. Quiet, low-key. This first Thanksgiving with him reminded me of how grateful I am for so many things.

William's update is as follows, quoting his mom:

Pre-op day is in the books. William was a champ. Anesthesia evaluated him first. He has developed a little cough and was wheezy when she listened so she ordered a respiratory panel and said if positive we will be postponed. Cardiology came in next and said if the respiratory panel is positive they will look at his right ventricle pressures. She said he is critical enough that the cardiologists and anesthesiologists will hold a conference and be able to determine if he is critical enough to proceed. We asked how long we could wait for the cath, and the cardiologist misunderstood thinking we were asking when he may require a surgery. Her answer was that the hope is to manage the problem (whatever it may be, we don’t know yet) via cath but if not we would be looking at a surgery in 1-2 months. So if there is something specific we are asking for in prayers it’s for the cath to happen SAFELY and is a cath-fixable problem.

These boys are so brave. I had a nightmare the night before I took James in for his cath visit. I was scheduled to have a wire probe my heart and I felt cornered with no way out of it. I feel like these boys are fortunate in that they don't fully understand what's happening. The innocence of children in these situations can be a blessing. If only we could hold on to a bit of that innocence in adulthood.

Thank you all for continuing to follow along with me. William is currently at his hospital with his mom and dad, and I know his mom is so scared, even though she's a nurse and understands the process he must go through. Knowledge isn't always helpful for the anxious. And I think James is in the early stages of teething. It's been a test for sure!

Thank you all again. I will update when we have more to share.

💙💚💙

12/3/21

#prayer #prayer for healing #pray everyday #pray without ceasing #chdawareness #congenital heart defect #heart warrior #pray for me

[crikets-song]

Urgent Prayer Request for Baby William

Hello, my prayer angels.

James' heart buddy, William, who lives back home and is a few years older, recently went in for a scan to check out his heart. Initial scans showed that one of his lungs is not doing well and something is blocking oxygenated blood from getting to that lung.

Next week, around the time James goes in for his MRI/Cath visit, William will be doing the same, plus a CT scan.

His mom, who is also a nurse and works with my own mom, had this to say:

Today William had his 2 year post surgery follow up and while he looks fantastic on the outside his scans didn’t prove so show the same.

In may his lung scan was essentially normal for the very first time in his life and today they took a turn for the worse and were 87% of the flow to his right side and 13% to his left. Before even seeing the doctor he was already on the phone with our team coming up with our next step.

That next step is us heading to his hospital as soon as they can work us in for another heart catherization.

His breathing is concerning.

Please pray or send positive thoughts for our sweet boy! We were initially scheduled for just a heart cath December 7th with pre-op the 6th however yesterday we were called and Will’s case was reviewed by the team and was decided we needed to be out there by December 3rd for a CTA. I was hopeful we wouldn’t be needing it due to the high levels of radiation exposure and this will be his third in his short life but we will continue to trust and believe in our team!

William's CHD was an extremely serious one when he was born, and he has rallied and made it so far in his short life. He has brothers and sisters and an army praying for him, but it can't hurt to add ours to the appeals to Heaven.

William and James are amazing boys, going through such grown-up things. I hope that one day his mom and I can introduce them to each other.

Thank you all for your continued thoughts and prayers for James.

💙💚💙

11/19/21

#prayer #prayer for healing #pray everyday #pray without ceasing #chdawareness #congenital heart defect #heart warrior #pray for me

[crikets-song]

Hello James' Mom..........

............I hope you & your little family are doing great.  Skippy said that you indicated some struggles & you are expected to have them, even moreso due to the rather bumpy road you've traveled so far.  I would babysit for you so you could have your own 'me' time; I would send you to my massage therapist for an aromatherapy massage or even just a hand & foot massage.  A good foot massage cannot be beat!  Then you & hubby could go for a quiet lunch.  You could even give James a little mini foot massage with some lavender lotion (not his hands tho, as his hands are probably in his mouth alot)--no pressure, just some gentle rubbing on his feet & toes).

Anyway, I wanted you to know I am still thinking & praying every day for you, James & your family & I hope you have the joy & excitement every day of your little miracle!  love & prayers, be well, stay safe & gentle hugs for your little man!

****

A massage sounds soooooo good right now. I have an anniversary coming up. Perhaps I'll throw that hint out to husband. 🤭🥰

11/18/21

[crikets-song]

Just A Reminder....

....that you & your young family are loved.  Prayers & positive energy sent your way by many people!

*****

I love this so much. 🥰 Thank you!

11/18/21

[crikets-song]

Just Checking In....

......to say hello & hope things are going as good as they can be.  Still prayers & positive thoughts your way, every day!

********

Thank you so much! All of the prayers and thoughts are appreciated! Things are progressing as best as they can. Looking forward to our first Christmas!

11/18/21

[crikets-song]

Nothing sweeter than a babies smile and giggles. Sending a prayer for many many more🙏

********** Just seeing these messages! Thank you, anon!

#submission

[crikets-song]

Five Months In

James is five months old now. Looking back at some of what I wrote while he was in hospital and up to now, I can't believe how far he's come. From that seventeen week scan showing something was wrong to today, with the little guy exploring fall, I'm amazed.

I have been struggling with sleep though. I haven't quite solved the puzzle of sleeping when baby sleeps and awake when baby is awake. Sleep has always been a struggle for me though.

The last five months have been a challenge. Last week I was in the ER with him at the insistence of the cardiologist. He seemed to be swelling up after we took him off of one of his many medications, and I was advised to take him in for a check up. We were there a long time.

James had an x-ray and a consult with said cardiologist. In addition to swelling, he hadn't been himself since coming off medication. Fussy, not eating normally, less diapers... A check of his heart revealed it's normal, his shunt is still working marvelously, and his x-rays showed no fluid on his lungs. He's perfectly healthy. The swelling turned out to be him gaining a ton of weight, and he's just grumpy from growing pains.

Hallelujah, I'll take grumpy and chunky over grumpy and swollen!

A week from tomorrow he will go in for an MRI and cardiac catheterization labs. These are necessary for the doctors to see how his heart is growing and what steps they will take for his next surgery.

That next surgery. The second open heart procedure for him has been scheduled for January 5, 2022. It feels far and close at the same time. He'll be a few days shy of his 7 month birthday during that procedure. I'm not ready.

A January open heart means we have the holidays, though. I plan to squeeze as much joy out of it as I can. This little boy, as much as he's been through, and put us through, is just a sweet boy. My live grows every day.

#prayer #prayer for healing #pray everyday #pray without ceasing #chdawareness #congenital heart defect #heart warrior #pray for me

[crikets-song]

I have followed your journey since your first post with Skippy & I have prayed every day (& continue to) for you & your baby.  It was such a joy to read your latest update, from home, with your baby.  I could feel in your words the excitement to finally put James to sleep in his own crib, & yes, if he is sound asleep at 3am, let him be; he may well wake up 10 minutes later!  The frustration at trying to get meds into a baby's  mouth; I assume a small syringe is used, so perhaps push out 1/2 the dose into one cheek, wait a few moments, then push the other half in the other cheek (not trying to sound like a know-it-all, but sometimes that works).  The pure joy you feel when he smiles/giggles/laughs at you & you're at home, not the hospital.  & it all only gets better!

It may take a while to find your 'groove' or schedule, but it will all work out.  I'm including a link to a story about a woman with 5 children.  She wrote a poem/song after the 5th arrived & the last paragraph became very popular nursery decor in the 1970'/1980's.  I had embroidered the passage for my own children's nursery.  http://www.lullaby-link.com/song-for-a-fifth-child.html#:~:text=Her%20poem%2C%20Song%20for%20a%20Fifth%20Child%2C%20was,tensions%20that%20pull%20at%20us%20all%20as%20mothers.

Enjoy this time, embrace all the joy that James is brought into your life & that dream of spending a year living in England could be closer than it seems.  May every day bring you peace, love & joy.

-----------------

Thank you so much! I'm reposting this so that others can follow the link if they want.

It's nice to be home, but he's proving to be a challenge. He's got his papa and me in tears these days because he's not cooperating. He just got so mad at us a few minutes ago that he cried himself purple and held his breath. I really do hope this doesn't end up with us in the ER. One hour at a time.

💙💚💙

9/10/21

[crikets-song]

Your Time Will Come

An elephant and dog became pregnant at same time. Three months later the dog gave birth to six puppies. Six months later the dog was pregnant again and gave birth to another litter of puppies. The pattern continued.

In the 18th month the dog questioned the elephant, "Are you sure you are pregnant? We became pregnant at the same time. I have given birth three times to a dozen puppies and they are now grown dogs, yet you are still pregnant. Whats going on?"

The elephant replied, "There is something you must understand. What I am carrying is not a puppy but an elephant. I only give birth to one in two years. When my baby hits the ground, the earth feels it. When my baby crosses the road humans stop and watch in admiration. What I carry draws attention. What I'm carrying is mighty and great."

Don't lose faith when you see others achieving their success.

Don't be envious of others results.

If you haven't received your success, don't despair.

Tell yourself, "My time is coming, and when it hits the surface of the earth people will know and yield in admiration."

Cheers to your journey!

[crikets-song]

New Routines, New Experiences

If you sent out a thought or prayer for James, thank you.

I should be taking a nap while the husband has James, but I wanted to get some thoughts down. Goodness knows I have a lot.

James came home on Monday, September 6, 2021. Labor Day in the U.S. His nurses were sad to see him go, having made up an unofficial fan club of sorts. He was very much loved in the hospital.

This week has been a flurry of activity. His first pediatrician visit was on Wednesday, and it was the perfect storm. The emergency bottle I stuck in the bag leaked everywhere, James screamed the entire time, and he had a diaper that I don't care to describe. James' doctor said he spent the better part of an hour going over our case, seeing that there were some holes in the information he received from the hospital. So over the screams of baby, we filled in some missing information where we could.

What husband and I are really having a hard time with is medication administration and feeding. We were told it was so important to get James to eat every three hours, and I can understand why. But between midnight and 3 a.m. if that little boy is asleep, and deeply asleep at that, why in the world would you try to wake him?! After two nights of that I said no more. Let sleeping babies lie.

We administer five medications twice a day, with one subcutaneous shot. James was so good about taking it all at the hospital, but at home he's decided to spit meds out when possible. Luckily the shots are small and he's taking those well. These meds keep his shunt clear of clots and keep his heart in a normal rhythm, and when he spits out the carefully measured meds, I go into panic mode. Giving him more could be lethal, and not giving him enough could be dangerous. Either way we could end up back in the hospital if the dosing isn't working. God, please help me.

Regarding work...

A colleague of mine messaged me to get the story on James. She's been out of the loop and so I filled her in. She's in England right now, on sabbatical from work, but doing things FOR work. We work with rare books and manuscripts, so being in England is an amazing opportunity for research. Especially at Cambridge Uni.

I went to England in 2007 as part of a college class trip that I pushed really hard to get going. It seemed like a logical experience for English Lit/Writing majors since many other departments took similar trips. Spanish students went to Spain every year for immersion, as did the other language departments. The History department sent students around the country for classes as well. So I pushed this idea to many of those in the English Department and they finally said "okay."

The trip was a trial run and 12 of us went, with an understanding that we would be presenting to department heads and their colleagues what we learned and why we thought it related to our majors. This wasn't to be a vacation, it was for education. Four of us hit the train every day at 7 a.m. to a destination we all agreed on the night before. We stayed in Reading Uni dorms and made our way to London, Oxford, Bath and Caerphilly Wales. I broke down in tears in Oxford because it hit me then, in the middle of a tour of the University, that my lifelong dream of being in England had come true.

Since then I've vowed to go back, and this colleague I mentioned earlier has said she's thinking about pitching an idea to our bosses about a work exchange program/professional development program between our institution and Cambridge Uni. She said she'd brainstorm ideas about how to get me to Cambridge for a year.

I'm realistic enough to know that there are those I work with who are far more deserving and even more logical for such a program, but it doesn't stop me from dreaming about living in England for a year. What an opportunity to delve into history and literature, to write, to show James some of the world outside of his home country. Oh, my heart leaps at the thought!

For now, I find myself with a terrible headache but hope that we can make it through to tomorrow. James turns three months old tomorrow. And it's a joy to celebrate that milestone at home!

💙💚💙

9/9/21

#pray everyday #prayer #prayer for healing #pray without ceasing #chdawareness #congenital heart defect #heart warrior #pray for me #prayers answered