March

Can you believe tomorrow is March...CRAZY!!!

That means I am having a baby this month.  Did you even know I was pregnant?  Don't worry if you didn't. I have forgotten at times.  Tyler has been more than a handful since we got back from the hospital so I have put having a baby on emotional hold trying to resolve his issues.

I think I am almost at the point of realizing that I can do it.  Newborns sleep a ton and never argue.  They conveniently fit in a little pouch and will cuddle all day long.  Not looking forward to getting up at night and a ton of diaper changes.  But I am going to have pants that don't sag off my butt in a couple of weeks and am super duper excited about the summer.  Hoping Kira will be a wonderful big sister and a new baby will bring so much love into our home.  I can get my kidney stones crushed and won't have chronic pain.  So it is all going to work out.

I am almost certain it is a little boy.  I have not felt sick like I was with Kira.  I would be shocked if it was a girl but laugh that I thought Tyler and Carl were girls and they were boys. We shall see if I am right.  Excited either way.  Hoping we get a calm child.  I know it isn't in our genes and I am probably kidding myself, but miracles can happen right?  I will probably get an epidural but always scared of being paralyzed so we shall see.  Not sold on any names, but haven't put much thought into it either.  I think we'll choose a name when we see the baby.

I haven't been to the doctors in about two months which is horrible. I need to make an appt.  I need to find a couple of outfits to get us through the first week.  I think I gave most of my boy things away, but I am sure I can find something that will do. I have a bassinet at my parents that we never got rid of.  Need to get some newborn diapers and my swing back from a friend.  Need to find my baby bjorn.  And that's it.  I will probably get around to it in a couple of weeks.  It really is amazing how little you really need.  I remember getting all of this stuff for Scott and with each child you realize what you don't need.  It is a great feeling


So here's to march...Getting through Tyler's surgery that we are hoping will make him so much happier and a new baby. I need to have Danny take a picture of me.  I don't think I have any.

What have we been up to?  Well, Tyler has been a challenging case.  We aren't sure what to do with him.  He screams quite a bit and doesn't respond to logic or threats or even love.  I pretty much just put in my ear plugs and have Heidi deal with him.  When he's not screaming, he can be quite pleasant.  He is eating a little more and has recently discovered cinnamon toast.  He's still afraid to go to certain places, like church.  He threw a big tantrum this morning but seemed to do fine through all three hours.  

He is afraid to go outside but I was able to coax him into riding Bessie with me.  He enjoyed that.

 Kira has been the most resilient to the stresses we've been having.  She is talking quite a bit and uses way more Spanish words than the boys ever did.  She is obsessed with shoes and enjoys dressing herself.  This week she potty trained herself.  She goes in her little plastic toilet, then picks it up and dumps it in the big toilet.  She is the most independent of the three kids.  She's scared of riding Bessie but likes to wave to her.

 Scott is doing well with piano.  He knows Cuckoo and Honeybee quite well and we are working on Lightly Row.  We play the Suzuki disc every night and he likes to hum along.  It has helped his singing, too, as he couldn't carry much of a tune before but can sing on key more consistently.

One day, Scott and I were working on Bessie.  He said, "How did you make Bessie?"

"Well, instead of playing DS or the iphone, I was out doing my projects.  Look at that, I have Bessie to show.  What do you have to show for playing your DS?"  I thought it would motivate him, but what did he do?  Went inside to play DS.

Tyler was in a good mood on Saturday.  Normally, he wakes up in a sour mood but on Saturday, he was smiling.  

We have much to be grateful for.  It's sometimes hard to count our blessings, though.  My back still hurts and it's hard to stand up straight, but at least I can walk on my own two feet.  Heidi has had to deal with a lot of stressors this year, namely, the condo flood and Tyler's recuperation.  Put that in your pipe and smoke it, Bachelor Ben.  

Yes, Heidi and I watch the bachelor on hulu.  It's amusing to see this "reality" show because the girls break down in tears when he doesn't take them on a date.  Suddenly, our life doesn't seem so hard.  Some people hate their jobs.  Some have no job and want one.  Some hate their spouses.  Some have no spouse but want one.  Heidi and I have each other, three unique kids, I have a job that I like, and we have a nice place to live.  And the van has a subwoofer.  We have a good life.

Prayers

Often we go through life praying for guidance and solutions to daily needs both large and small.  I don't have a doubt that the Lord answers and hears each and every prayer.  Some are answered in ways that we plead for.  Others come in unexpected or unwanted ways simply because the Lord has a greater plan.  While others come and go unrecognized by our mortal eyes.
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Every time I am in the hospital with Tyler, God's hand becomes more and more visible.  Perhaps it is because it is so evident that we don't control everything in medicine or life.  We can take care of our bodies and get medical help, but at the end of the day, the unexplainable of medicine can only be explained by a higher Being and greater plan.
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Being in a cardiac ICU is always a spiritual experience.  I know that these kids are surrounded by ministering angels.  You feel for the parents and loved ones that are hoping and praying for their child's recovery.  I have been blessed to meet some incredible kids and families while caring for Tyler.  Families that you share a special bond with because they understand your journey, concern and love for your heart child.
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This past visit was no exception.  Danny and I were blessed with the privilege to get to know and love a family that was in the room next to Tyler.  Their daughter, who was my age, underwent open heart surgery and had major post surgery complications.
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Her best friend was LDS and had been praying for someone to be able to come and give a blessing to her very sick friend. She had tried calling local bishops and wards and was unable to get a hold of anyone.   She found out we were LDS and asked Danny to give her friend a blessing.  She felt this was an answer to her prayers.
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She said she had been praying for a miracle and as Danny laid his hand on her best friends head in the hospital, she knew that the miracle she had been praying for was not the Lord's will.  Instead of continuing in her mortal sojourn, the miracle was that she didn't have to suffer in this life anymore and all were reminded that this life was not the end. The family was greatly comforted from the Lord's words.  The spirit was so strong and brought much needed peace.
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The priesthood is a marvelous thing!  How grateful I am that it is able to bless lives and give comfort to those who are in need of comfort.  How grateful I am to be reminded that sometimes the miracle is not having to suffer any longer in this life and that there is a far better world awaiting us.
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The Lord's Perfect Timing

Many of you know that Tyler's surgery was postponed twice.  In August, the surgeon wanted to increase his meds to see if there would be an improvement in his heart function and AV valve.  The meds  greatly improved his heart function and he was scheduled for surgery in November.

Everything looked great, however, surgery was again postponed.  The surgeon was not happy with how anesthesia dealt with a case and was only willing to work with certain anesthesiologists who were experts in cardiac anesthesia.  While some suggested we should be annoyed or upset at the inconvenience of postponing surgery again, Danny and I were grateful for a surgeon who was standing up for what was best for his kids.  We felt like it was in the Lord's hands and for some reason, that we could not explain, surgery was postponed.

So Tyler went in for surgery in January with the best cardiac anesthesiologist.  We can now see why that was so important for Tyler and are SOO grateful that our surgeon postponed his surgery.  I explained a little bit about the incident that happened in the OR with his sternum being stuck to his heart.  This created an air embolism to enter into his heart and thus a need to do an emergency arterial cannulation to place him on bypass and thus bleed the air.

This could have had devastating results, but Dr. Azakie said that he had the best team to deal with the emergency.  They knew exactly what to do and got it done in a very efficient and controlled manner.  I know that the Lord knew what was going to happen in the OR before it even occured and placed the best team in the OR to deal with this emergency.  How grateful I am for a surgeon who is standing up for what is best for these kids.  I am sure it is not easy.  I really feel like the Lord was watching out for Tyler and am grateful for His perfect wisdom and timing in all things.

Home freakin sweet home

Grammy and Grampy came to California while Tyler was in the hospital.  Grampy brought Bessie and Scott got quite a kick out of her.  Tyler is doing well physically but seems to suffer from some post-traumatic stress disorder, which is understandable.  He is afraid to leave the house.

Tyler had his cardiology visit with Dr. Cooper and his sats were not stellar.  The MD's are going to close the fenestration via catheterization in the middle of March and that should improve the numbers.  Otherwise, he has been sleeping through the night and his incisions seem to be healing well.  Kira and Heidi were sick, Scott is just getting over a two week bout of dry cough, and I'm hanging in there.

We're Home

Tyler came home exactly one week after his Fontan.  Truly a miracle.  We are so grateful!  He will go back in about 6-8 weeks to close up his fenestration.  I will post more tomorrow when I am not so tired.

Post Op Day 6

Tyler continues to progress.  He has one IV left and we are hoping to go home in the next day or so, but we shall see. He is starting to get agitated with everything and everyone.  He did great for the first week and after that has had enough.  I remember reading on so many blogs about how their kiddos do fine emotionally for the beginning of the Fontan stay and all of a sudden hit some major mental hurdles.  I am trying to be patient.  Having a hard time knowing how firm or understanding I should be with his meltdowns.  Tyring my best to just reassure him that everything will be alright and trying to have him communicate nicely what his needs are.  I have been so surprised how great he has communicated his feelings and needs.  Even if it is yelling at the top of his lungs that he doesn't want another IV or doesn't want to watch TV at least he is communicating.

He woke up, got blood drawn, an X-ray taken and things look good.  His ventricular function is alright, his effusion appears to be gone and he is recoving nicely.  The main reason they don't want to send him home today is to really make sure his body is collecting fluid in his lungs.  This is very common in Fontans and the last thing they want to do is send a kid home prematurely just to have them back in the hospital a couple of days later.  Diuretics can usually resolve the problem, but if you are home, nobody knows what is going on.  The x-ray today was hopeful that this shouldn't be a problem.

He is taking a nap now and then we are off to play bingo. Last week he got a nerf football that was a lot of fun.  The little things make such a big difference.  So many friends have brought him things, sent him cards and called which make his day.  Thank you so much for all your love, support and prayers.  We defineteley feel them and the power of prayer!

Back to Normal

Tyler was watching Wild Kratts this morning.  In order to give Heidi a break, I climbed into bed with Tyler and watched TV for about twenty minutes. 

Quietly, Tyler said, "Daddy, I want you to get out of my bed."

"You want me to go?"

"Yes."

So, I left him watching Arthur while Heidi slept.

I slept in 6 long, and at 3:42 I woke up to a strange smell.  Then, the fire alarm went off.  I put on my shoes, got my camera, and ran out the emergency exit.  The fire doors were closed and I didn't know how to exit the campus.  Finally, I saw one nurse outside.  Don't they make everyone exit the building during a fire alarm?  Apparently not.  The fire trucks showed up and the security guards said, "Some truck was idling into the air intake.  We're just waiting for clearance from the fire department." 

Minutes later, the PA announcer said, "Code red is cleared." 

I didn't fall back asleep until 5:42 and then at 5:59 I woke up to get my day going.  Oh, they moved Tyler to the transitional ICU and he was not pleased about that and screamed for about 10 minutes.  He got his original suite, #8, and it reminded of him of pre-surgery and the memories haunted him.  It took a while to calm him down.

I think he's doing well, though.

Progress

Tyler was smiling today, though this picture doesn't capture it.  I rode the VFR to SF tonight and Janet greeted me as she was leaving her shift.  She said, "Tyler has quite a set of lungs."  I was like, "You guys need to wear ear plugs.  But at least it's a sign that he's doing well when he complains."

They removed his chest tubes, foot IV, pacemaker leads, and oxygen cannula.  All he has is one IV in his wrist and it looks like we're at the beginning of the end.  Go, Mr. T!