Happy Hearts

Afraid

I am sooooo ready to not be pregnant.  I'm pretty uncomfortable at this point as all mamas understand.  I do fine throughout the day but am close to miserable by nightfall.  However, while I am so ready to meet sweet Evangeline Kait, I am getting scared.  The memories of Maggie's first days are all coming back quite vividly. 

I remember my amazingly easy labor - 3 hours from start to finish - and 1 hour was spent waiting for my dr. to get out of a c-section.  I remember holding my sweet baby girl... all 7 pounds and 8 ounces of her.  She was perfect except for the big scratch across her forehead.  I held her, nursed her, and couldn't wait to get her home and start our life together as a family of 4.  She had an Easter dress and basket waiting for her in her room.  Her big brother, my sweet 19 month old baby boy, was ready for us to be home and so were we. 

Then, in a moment, life changed drastically.  Through her discharge exam, we learned that our sweet Maggie Jane had a very broken heart and that she would be transferred to SLCH within the next hour.  Our world as we knew it came crashing down around us and we were left wondering how to move, how to breathe, and how to live. 

That is what I'm afraid of.  I am terrified that what seems to be our life, will change in an instant.  That is what I was thinking about this morning in the van on the way to a playdate.  I was full of fear.  I was singing along to a song on our local Christian radio station and praying silently for Evie and for us.  For the life of me, I can't remember what the name of the song was, but one of the lines said, "Why am I afraid" and I sang along with it thinking, how ironic.  Then, from the seat behind me, my beautiful, almost 3 yr. old, miracle girl says, "You don't need to be afraid, Mama because God is here.  Right?"  "Yes, baby girl, that is right." 

I am not joking!  I couldn't believe it.  My eyes filled with tears and I just started smiling.  Just as my sweet little girl said, God is here, and I do not need to be afraid.

Alive

I was born with 1/2 a heart...

(Double Inlet Left Ventricle)

 

My main arteries were plugged in to the wrong spot...

(Transposition of the Greater Arteries)

 

 

The main vessel that was meant to supply blood to my lower body had a break in it...

(Interrupted Aortic Arch)

 

I had not 1...

 

not 2...

 

but 3 surgeries...

 

 
   
 by this man...

 

to complete the repairs needed to keep me alive. 

 

And ALIVE, I am!

 

I enjoy every minute of my life!  
  

Recovered

It has been 5 months and a few days since Maggie's Fontan surgery.  Numerous people have joined with us in praying for our Maggie Jane.  She has been on many prayer lists including the one at our church and my MOPS group.  They both read, "pray for Maggie Jane Mahoney as she continues to recover from her open heart surgery."  In fact, a month ago, the mom from our MOPS group who puts together the newsletter and prayer list, asked me, "How is Maggie doing?  Should I still keep her on our list?".  I had to think about this.  Obviously, I will always want prayer for Maggie.  However, it read that she was still recovering from surgery.  Was this true?  I told her to keep it on there until her Feb. 1 appointment, and then I would let her know.  I just kept fearing that something would go wrong in between appointments and we would take a step back. 

So, after today's appointment, I would have to say that Maggie has indeed recovered from her surgery.  She is being taken off of her "recovery" meds and doesn't see her cardiologist for a whole year.  I talked with Dr. S. today about "failed fontans" and she was very honest with me.  It is still a very real possibility for Maggie's fontan to fail and that will always be a possibility.  However, it is a complete unknown and she shows absolutely NO signs of it occuring.  Dr. S. looked at me and said quite bluntly, "You know, we never know when our healthy children are going to get diagnosed with cancer or be in a fatal car accident.  It's out of our control and there's no point worrying about it.  You are now going to only see me once a year.  It is your job to ALLOW your family to be as normal as possible.  Your daughter's heart has been repaired and it's time to enjoy life." 

WOW!  I totally needed to hear that.  It's not going to be easy for me to do, but it's what I have to do.  I know that there will be days that the worry and fear creep in, but my prayer is that I will be able to live each day with a peace that surpasses all understanding.

So, while Maggie pours her "yucky medicine" (lasix) down the drain, I'm happy to say that she has recovered from her 3rd heart surgery!

So happy, to be done with lasix!

 

Maggie Update

Maggie had a cardiology appointment this morning and it went great.  I have to say that I was very anxious for this appointment.  We hadn't seen Dr. Sharkey in 3 months and I couldn't help but wonder if anything had changed in that time.  There has also been a lot going on in the "heart world" and I was beginning to do my share of worrying.  However, Dr. Sharkey assured me that there was nothing to worry about.  I just need to learn to take one day at a time and stop thinking about the unchangeable future.

Maggie's blood pressure and heart rate were wonderful.  Her oxygen saturations are still hanging out at around 90%.  I will address that in a minute.  Dr. Sharkey said her lungs sounded perfectly clear and her liver felt wonderful (enlarged liver is sign of heart failure so they always check that).  It had been awhile since she had an echocardiogram so we had to tackle that today.  I am so thankful that Maggie went with me for my last ultrasound because she got to see me lay still for it and see that there wasn't anything to be afraid of.  She was so incredibly brave!  My amazing 2 yr. old laid so still which is quite a change.  She has been sedated for the last 2 echos so it was quite a relief.  She was not thrilled with getting her EKG because they put 10 little stickers on her chest and belly and she doesn't like those at all.  They hurt when they take them off.  She made it through like quite the little trooper.

Dr. Sharkey said that her heart function was absolutely wonderful!  Her EKG looked great too!  She thought that one of her pulmonary veins seemed a little small so she is going to go back and look at her cath pictures from July and see what those showed.  Because of her lower than desired oxygen saturations and potential narrowing of the one pulmonary vein, Maggie MIGHT have a cardiac catheterization late this coming summer.  We will know more after Dr. Sharkey looks at the cath from July.  If they do a cath, they will be mainly just verifying that everything is as good as it appears to be, checking that pulmonary vein, and coiling some more collaterals to get her saturations higher.  I am totally okay with this.  In fact, it will be nice to know for sure what is going on in side her little heart and to hopefully get those oxygen saturations up where we want them.

Dr. S took her completely off of her lasix which is huge for us!  Maggie hates that medicine and it makes her pee like crazy throughout the night.  It will be nice to not have to change her in the middle of the night.  In one month, we will also discontinue her diuretic.  So, after March 1st she will be down to 3 medications again!  Praise the Lord!!!  AND... except for the potential cath in August, we don't see Dr. Sharkey for a whole year.  We have never gone this long, so please pray for peace of mind for me.

We are so thankful for the good news of this visit, and even more thankful for all of you who have been lifting our sweet girl up in prayer.  Thank you, Lord, for continuing to keep Maggie's heart strong.  We are so blessed.

An unexpected note

One day, last week, Ryan walked in with the mail and made my day.  In his hand was a note from this man:

I don't talk about him very often, but this is the man who saved Maggie's life.  He was the house pediatrician at St. John's who did Maggie's discharge exam and heard her heart murmer.  Because of his careful concern, we did not make it home with our newborn daughter where her heart would have begun to give up and she would have become very blue and very possibly died before we could have gotten her to the hospital.  He ordered an echocardiogram and the rest is history.  Very often, pediatricians hear a heart murmer and send the child home with orders to have it checked at their next appointment.  We are so very thankful for this man and have kept him updated on Maggie's progress.

We, of course, sent him a Christmas card with pictures of the kids and an update about our family.  He took time out of his busy schedule to write us a fairly lengthy note that said how happy he was to hear how well Maggie is doing along with some other things and updates about what he is now doing.  It was so good to hear from him.  I cried as I read his sweet little note and thought about what he means to our family.

Maggie (written by her daddy for her Pinkalicious party)

This is something that I've been wanting to post but hadn't gotten around to.  This is what Ryan shared with the guests at Maggie's Pinkalicious party in November.  My husband does not share his heart often.  He guards it carefully.  However, I always love it when he does:

Today we are here to celebrate.  Celebrate Maggie and to say thanks.  This is a day of awesome joy and a day to mark being "pink".  We are thankful to some amazing doctors that made this possible.  Thanks to you all for being part of the journey through time and expense and prayer.  Thanks to God for being with us all and seeing Maggie this far.

I was mowing my lawn the summer after Maggie was born and I was thinking about my child's life.  I remembered this passage from Romans:

Romans 9:20-21  Who are you, a mere human being, to criticize God?  Should the thing that was created say to the one who made it, "Why have you made me like this?"  When a potter makes jars out of clay, doesn't he have a right to use the same lump of clay to make one jar for decoration and another to throw garbage into?  (NLT)

I found little solace in this passage other than I knew that God was in control and as I thought a bit more I drew the conclusion that my daughter was in some ways more fragile than the average jar of clay.  I thought perhaps that instead she was something more special and precious.  Maybe instead of a jar of clay she was a china cup.

I think in many ways this analogy is fitting:  Porcelein China is fired hundreds of degrees hotter than regular pottery and Maggie has been through more fires than many of us will ever see.  Something else about Maggie being a china cup seemed right as well.  Fine China is partially transparent... it lets strong light through.

2 Corinthians 4:6-7   For God, who said, "Let light shine out of darkness," made His light shine in our hearts to give us the light of the knowledge of the glory of God in the face of Christ.  But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us.  (NIV)

Maggie's life has touched many more people than we or she will ever know and your letters are a testament to that.  God has done something good and great here and now, and today we celebrate and are full of joy.  But no matter what today or tomorrow holds for Maggie Jane or for our family or for you, we take greatest joy in knowing someday:

Revelation 21:3-5   And I heart a great voice out of heaven saying, Behold, the tabernacle of God is with men, and He will dwell with them, and they shall be His people, and God Himself shall be with them, and be their God.  And God shall wipe away all tears from their eyes; and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain:  for the former things are passed away.  And He that sat upon the throne said, Behold, I make all things new.  And He said unto me, Write: for these words are true and faithful.  (KJV)

Again, we have waited for this day for a long time and we are very grateful that our girl is pink.

My Big Girl

This weekend, Maggie hit a HUGE milestone.  The paci fairy came to visit.  It is something that we've been talking about for awhile.  She'll be 3 in April and it was time.  We wanted it to be gone before Evangeline arrives, but I had been dreading making the step.  We started doing it gradually.  She got it during naptime, bed time, and in the car.  However, I would give in to her sweet pleas and let her have it other times as well.  This is why we decided to do it cold turkey.  I felt like it was almost harder on her to have to understand when she could have it and when she couldn't.

So, friday, I was all geared up to take the plunge.  Ryan and I went to Target and bought a couple presents that she would get after she gave her pacis to the paci fairy.  Then, it all hit me.  I hated the thought of making her give up something that was so special to her.  I kept seeing her sweet face in my head and I could see past the pacis.  I pictured all of the things my sweet girl had been through and I didn't want to make her do one more difficult thing.  If any child deserved to keep her pacis a little longer than is recomended then it was my girl.  Then, I got home and read a post from my dear blogging friend and it made it even harder.  I thought of every excuse to let her keep them... to let her stay my baby just a little longer.  However, I also knew that she would have to get rid of them some time and it wasn't going to be any easier on her or ME if we kept waiting.

So, Saturday, she got to have it all morning.  We took some video of her doing her paci trick (spinning it from upside down to right side up with no hands).  She told us how much she loved her pacis.  Then we told her that she was a big girl now and it was time for the paci fairy to come and take her pacis away.  She put her pacis in a little gift bag and put them on the front porch.  As soon as she came in, she ran to the window to watch for the paci fairy.  It was sooooo cute.  The best thing about the paci fairy is that they don't come until you go to sleep.  So, she laid down for her nap and went to sleep without a tear.  When she woke from her nice, long nap, the paci fairy had come and gone and had left her a present... a big bouncy ball and a princess toy.  She even got a note from the paci fairy. 

She has done so well with it.  She asks for her paci a couple times a day but has not cried about it at all!  She is having a little difficulty sleeping at night but that will get better with time... hopefully sooner than later.  I love my big girl and I am so proud of her. 

Colorado 2009

We spent the week after Christmas in CO at my parent's mountain home.  Every year we make more memories and enjoy the beauty of God's handiwork.  

 

Trent spent way too much time playing his new Wii game... Monster Jam, of course.

 

Yet, he thoroughly enjoyed sledding...

 

  

While he was a little timid with skiing at first...

 

 

  

... he LOVED it after awhile...

 

...and was doing it all by himself at the end!

 

We are now saving our pennies because this ski bum...

 

...is ready for ski school!  We were so proud to see the progress he made this year. 

 

Maggie was definitely NOT interested in skiing or sledding. 

While she gave both a try...

 

... she was much more interested in playing with the snow and on the playground!

 

 

We were thrilled that she was able to stay out in the cold with us without turning blue.  This was a definite first for her and was wonderful to see.

Ryan and my Dad enjoyed 2 days on the slopes, while I enjoyed reading a book by the fire and spending time with my favorite people.

 

 

  

 

  

 

Faith

When life doesn't take you exactly where you thought it would,

it takes faith to know you are exactly where you are supposed to be.

 

 

I loved this quote so much that I "stole" it from my friend's blog.  This is definitely not where I ever thought I would be.  It's been quite the journey so far, and I will admit that I am terrified of the unknowns of the future.  But I will trust that my God who is Mighty to Save has me exactly where He wants me to be.

Sledding

Well, I promised these pics before Christmas but it didn't happen.  A few days before Christmas we got a very light covering of snow.  However, it was just enough to go sledding.  Ryan's Great Aunt Rita had sent some money for the kids for Christmas and we picked out some sleds for them.  They got to open them a little early so that they could enjoy the snow.  They had lots of fun and we got a little glimpse of how much they would enjoy CO... or so we thought.