11.05.2012

31 Days: Love Letters from Mommy - Day 15

Dear Ryan and Quinn,
 
I'll keep it brief and to the point for this letter.
 
Please
 
stop
 
growing
 
up.
 
Quinn - 2 years, 4 months. Preschool picture - 2012
 
 
Ryan - 2 years, 4 months. Preschool Picture - 2012


Oh, you are killing me, you guys!!! Love you to the moon and back.
 
 
Love you always,
 
Mommy
 
 
 
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11.04.2012

Q Heart Update - The Gift of Time

Well, we've said it time and time again --- just when you think you know what to expect and start making plans, you are thrown a curveball in this world of CHD's.
 
However, this was a good curveball. I'll take it happily.
 
Last I wrote, we were expecting Quinn to be scheduled for an intervention catheter where they would place a balloon stent in both of her branch pulmonary arteries to help with the narrowing in those areas. However, after consulting with the "man" (ie: our hero, Dr. Fraser, who we trust implicity), he decided that she could wait closer to a 6 to 12 month mark before undergoing the surgery. Basically, although the arteries have moderate to severe narrowing, her right heart IS functioning well and seems relatively unaffected. Thus, he decided that it would be best to put off the cath as long as possible - again to give her arteries more time to grow. (How many times have we heard that???)
 
But basically, this gift of time will give the catheter docs more options when placing the stents. Again, we haven't met with the cath docs, so I don't know all the ins and outs of the procedure and what exactly can or will be done. Or how long it lasts, etc. Communication has been somewhat stunted with our team up at TCH given the absence of our cardiologist --- and not knowing exactly who was taking Q's case. So they don't really know her, only her chart --- somewhat disconcerting to say the least. Thus the delayed results and plan of action through this process since her MRI's. That's why it was such a relief to have them consult with Dr. Fraser who DOES know my daughter very well. Thank you, Jesus, for this man and his brilliance.
 
So we will revisit TCH again in February for another echo and check the measurements of her narrowing. If it looks like it's getting to a dangerous level, we will move up the timeline. If they look ok and relatively unchanged - then we'll probably schedule cath sometime summer to early fall - hopefully before cold season again. Until then, we are to watch for signs that her right heart is starting to struggle. It wouldn't happen overnight where she would go into heart failure immediately (umm, thank the LORD), but it would be a slower progression of her losing energy, breathing with more difficulty, having to take longer breaks when playing, etc. The way this child moves all.day.long, it shouldn't be difficult to determine if that's occurring.
 
So after a very long and exhausting week, it was a pleasant surprise to get this news on Friday afternoon. Although we know this catheter procedure is inevitable, it's nice to know we can wait a bit longer, get through holidays and hopefully a 3rd birthday without any more intervention.
 
Team Q prayer warriors: can you continue to pray for a few things?
 
1. Wisdom and discernment on the part of the doctors and surgeons involved in Q's case. That the process of determining who's in charge of her care would be streamlined and communicated effectively and efficiently to us.
 
2. That this gift of time would allow Quinn's arteries to grow nice and big, allowing the best of the best technology to help open up those narrowings.
 
3. That there would be no surprises in February and that her case would remain unchanged and on the same course of treatment we have planned.
 
4. And most importantly, for Matt and I --- that we can continue to roll with the punches as they come to us --- if the above does not happen, allow us to not be dismayed but just be able to adjust our course, prepare, and support our family the best way we know how. And to lean on God always - for His plans and His timing are always perfect.
 
I am reminded of this scripture (actually read in church today):
 
"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ,  through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us." - Romans 5:1-5
 
I especially love the suffering to perseverance to character to hope. How these words ring true to me today and always. Hope always prevails --- and His Hope is available to us all because of His Mercy and Love. How HOPEFUL is that??? And through our suffering and trials, we continue to persevere, one step at a time, building our character and developing experiences, so that we come to know God on an even deeper and more personal level. That is when we are completely dependent on Him and know that we can do nothing without the rock of Jesus we stand upon. And I know that going through our trials of Q's heart continues to make us all stronger, build our faith in our Lord, and provides HOPE for her future, our future.
 
In His Hope and Mercy,
 
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11.03.2012

Halloween 2012 - Well, not really.

This year for Halloween, the kids dressed up as terribly sick little people. Not exactly the butterfly tutu and pirate costumes I had in mind (Note to self: leave the tags ON until you are sure they are going to be worn)
 
It was a LONG week. Ryan came home from school Monday with a horrible cough and low grade fever, and Quinn quickly followed. Tuesday, they were a coughing, sneezing, feverish mess, but in the past when I've drug them to the doctor for such symptoms, I always would hear "virus. rest. fluids. tylenol." And "I'll take your $50 copay now".
 
Not that I was trying to avoid the copay but the dreaded word virus gets very annoying after a little while. But by Wednesday morning (Halloween), things had taken a drastic turn. Both were burning up, coughing, wheezing, and then the kicker, "my ear hurts". Off to the doctor we went. With a mommy who had chosen to put off her shower until the kids were supposedly at school. Oops. And a raging migraine.
 
Anyway, both kids had an ear infection in their right ear (twins, trying to do everything together), but the worst news was bronchial infection - basically RSV. Dreaded RSV. You've got to be kidding me. And the doctor was especially concerned with keeping a close eye on Quinn --- with her heart function and those narrow branch pulmonary arteries, a chest infection severe enough could force too much pressure on her heart and drop her pulse ox levels like a rock. Oh my.
 
 I left with 2 bags full of breathing treatment supplies and stopped by the pharmacy to pick up their littany of prescriptions. $150 later and not one pair of shoes or a bow to show for it, we were home. With strict instructions that there would be no outside play that evening. Ie: no trick or treating. Not that they were in the mood.
 
They spent the rest of the day laying on the couch, while I alternated meds, wiping noses, changing horrid diapers, and trying to comfort two altogether miserable babies. I did manage to grab one sweet shot of them at least dressed festively for the doctor (this was after  a dose of meds and they were feeling better).
 
They had already shared the germs, so no point in not letting them hug it out.
 
 
Thursday was much of the same and started with wheezing like I've never heard in my life. I was rushing around in tears trying to get us all dressed to head to the ER, and finally the breathing treatments kicked in, and then I started breathing again. Crisis averted. They weren't great the rest of the day, but at least the horrible sound of being able to hear them breathe across the room dissipated. And I started to question whether the loony bin would have room by the weekend.
 
Friday, thank God, Ryan turned a corner and his fever for the most part disappeared but still had a nasty cough. Quinn's fever shot way up, so she was supremely miserable until alternating doses of Tylenol and Ibprofren did the trick. And thankfully, she was mostly happy the rest of the afternoon. By that night, as much as I just wanted to jump in my pj's and watch Triple D on the Food Network, I showered, washed, and dried my hair for the first time in a week (wait, I showered most days, just didn't wash and dry), and Matt and I headed out for an adult date night with our besties --- long planned since like September. Luckily, they were in good hands with "Uncle Jay" and we finally felt safe to leave them for a bit ---- and good lord, did I need it. And the bottle of wine that came with dinner.
 
I will say, I knew having children being sick would be difficult --- but seeing them both soooo sick at the same time, with no rest for the weary, was excruciating. Yes, it's nothing compared to heart surgeries or anything else like that, but when your child is miserable, nothing makes a parent's heart hurt more. And I was not altogether the most pleasant thing to be around this week. I didn't exactly carry myself with grace. By the time Matt got home from work each night, I would collapse from exhaustion (poor guy, he already is working his tail off at work, covering for his boss and he has to deal with a cranky wife on top of it --- oh and he's been sick too, sick enough to go to the doctor on Monday, which rarely happens) I joked about spending the night at the Holiday Inn to get away from the germs, but pretty sure they are already full ingrained in my body, and unless my superhero immunity kicks in, my guess is I'll be down and out within a week.
 
How's that for positive thinking?
 
The good news is that both kids woke up this morning FEVER-FREE for the first time in 5 days. And minus a few coughing spells, they are pretty much back to normal, even finally eating, fighting, laughing, playing, and destroying my living room one toy at a time. And I couldn't be happier. Matt is such a trooper --- he took full control of the kids today so I could lay in my pjs until 11am, watch Game Day, run out for some non-med related errands, and basically just relax. I say it all the time, but DANG, I am a lucky girl. And now I am about to hit the bed for naptime without having to worry about getting up to check on a kiddo. Thank you, Matty. I LOVE YOU. And I love the way you love our family.
 
So, kids, Halloween next year. I lived vicariously through all of the pictures posted by my friends on facebook and blogs (ADORABLE and by far the highlight of my week), and felt only a small pang of jealousy. There will be other Halloweens. Other costumes. And today I think they are feeling well enough that we may just throw them in their costumes anyway and snap a few pics.
 
Happy Halloween 2012!!!!
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10.22.2012

31 Days: Love Letters from Mommy, Day 14

Dear Ryan and Quinn,
 
Today we celebrate Quinn's real "New Heart Birthday". October 22nd will always be the day that Q got her new leash on life. September 27th was the date of her first surgery, but since we had a few, let's say, "glitches", the 22nd is the happy day.
 
Quinn, when I think back to that day a full year ago, I have such mixed emotions.
 
Relief - because they were able to figure out why you were not improving. We spent so many days between September and October not knowing exactly what was going on. We had NO idea that on October 21st you would be heading for emergency surgery for right heart failure the very next day, but we were grateful to have a solution.
 
Sadness - because the days leading up to that date were so filled with these feelings of despair -- not being able to just fix you and make it all better. I have never felt so helpless. And I never thought that in less than 30 days, I would send my child into life-threatning open heart surgery, not once, but twice. Signing those consents were torture.
 
And more sadness- Ryan. We had to be there for Quinn. We couldn't be fully present for you as you needed. You handled it with such grace. You had a host of loving family and friends looking after you but it killed me to spend consecutive 24 hour periods away from you.
 
Elation - Quinn, you are a SURVIVOR. You fought. You fought the good fight. And you won. 3 days after your surgery, you were awake and eating and smiling and cooing. My heart was so full to see comfortable again after being in pain for so many days.
 
Thankfulness - for all of those who prayed for our sweet girl. For all of those who brought meals. For all of those who cried with us. For all of those who laughed with us. For all of those who cared. We are beyond thankful and blessed by each and every one of you. We love you --- to the moon and back.
 
Grace - Only God knows. Only God knows what we will face. And only God can pull us through. With His mercy, we made it. I never thought I could and still can't explain how I survived it somewhat sanely. It's only God. Jer. 29:11
 
Thank you, Jesus, for our sweet little girl and sweet little boy. Only you know what we face in the future --- that is uncertain especially for Q. But what is CERTAIN - you hold us in the palm of your hand. Thank you for your love and mercy.
 
Love always,
 
Mommy
 
Ventilator free - Oct 23rd, 2012

Sitting up, October 25th, 2012

Morning of October 24th, 2012


Blessed, December 2012
 
 
 
 
 
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10.18.2012

31 Days: Love Letters from Mommy, Day 13

Yup, we are behind again. Or still behind. I blame the weekend. And an untimely dental appointment. At any rate, we keep plugging along : )
 
Dear Ryan and Quinn,
 
The other day I was reminded of the "high road".
 
We had an unfortunate run in with two (ok, I'll say it, kinda mean women) at HEB. Apparently I forced her to wait for 10 whole seconds while I waited for someone to pull out of a spot that was near a cart return. I always park near a cart return for y'alls safety so that I don't have to trek you across the parking lot AND so I can make sure you are safe once I return the cart. No big deal, right?
 
Well, these ladies thought it was a very big deal apparently. Such a big deal that they chased us all the way to the front doors of the HEB, where they proceeded to read me the riot act about how I was lazy and didn't want to park 10 more spaces away. I tried to explain my philosophy of not having you killed at the grocery, and they weren't having it. Instead of trying to reason with two angry women, I just stopped trying to talk and walked away.
 
And then I did something I wasn't proud of. And I'm still not.
 
I said (in a very loud voice) to you, "Ryan and Quinn, do Mommy a favor and never grow up to be that angry and bitter."
 
At the time, I felt ok about it. I mean, I was mad. And how dare they? And all the feelings of anger and unfairness got the best of me.
 
In the scheme of things, it wasn't a huge deal. I should have just walked away and shut my mouth.
 
It wasn't a Christ-like statement I made. And not something that I want to teach you. To always feel like you need to have the last word. Because you don't have to.
 
See, Mommy makes mistakes, too. And often. That's another good thing for you to know.
 
But maybe it was a good lesson for you that I messed up. Learn from me. Take the HIGH ROAD whenever possible.
 
There were always be people who say negative things, who do hurtful things, who cut us off in traffic, or try to bring down our days.
 
Our goal is to live life with joy and without resentment. And if we constantly sink to that level of bitterness that person is feeling, then we are no better off --- and in fact, bitterness can seep into our hearts.
 
The fact is, I don't know what set those ladies off that day. I don't know what is happening in their lives to make them in such a way. I pray that whatever it is that's bothering them (and surely not over a parking spot), is resolved and soon. For their sakes. And other people's at HEB.
 
But we never know the lives we are leading. So if someone is rude to you or unkind, do your best to smile (as difficult as it is), say "I'm sorry you feel that way" and move on. Living life like that - in the long run - is much more pleasant, although it may sting for a second.
 
That's not say you shouldn't stand up for yourself over a large injustice. No, that's not what I'm saying at all. Jesus didn't let people walk over him. So when you are truly wronged, then by all mean, say your piece (carefully, politely, and prayerfully). But if it's something small like a grocery run in, for the sake of everyone involved, let it go. Take the HIGH ROAD. Represent all that is good in a life with Christ.
 
All my love,
 
Mommy
 

 
 
 
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10.15.2012

31 Days: Love Letters from Mommy Day 12

Dear Ryan and Quinn,
 
 
This type of obvious rebellion and spite against your mother and her beloved team will only be tolerated until you are 3. You are so darned cute that I can't get mad now. But I love your enthusiasm, little man. Quinn, I need you to pick it up and start rooting for our Tigers. Gigi and I are counting on it!!!
 
 
 
 
May you always have team spirit (and go to college, whether it be that maroon one or the coolest one).
 
Love,
 
Mommy
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10.12.2012

31 Days: Love Letters from Mommy Day 11

We've almost caught up - maybe by this weekend, I'll be back on track! I know this thrills you as much as it does me.
 
Dear Ryan and Quinn,

I had a different letter in mind today, but given yesterday's news about Quinn's impending catheter, I'm switching directions. Right now my post about thank you notes doesn't seem all that important. (Oh, but trust we will go back to it!)

Actually, I don't even know what to write to you about this topic or how to convey what I am feeling.

Hmmm... great start to a letter.

Here's the thing:

My heart hurts. My heart hurts for you, Quinn, because you never asked for any of this "heart stuff". It just is. I can't explain it and I can't make it disappear. My hands as a mommy are tied.

My heart hurts for you, Ryan, because even at the tender age of 16 months that you were last year during Q's surgery, you missed your sister and cared about her. And that will only continue to grow. I don't know how I am going to explain later on why Quinn has to go through these particular trials and you don't.

Hopefully something that will always be evident to you is that your daddy and I have faith --- we have faith in a God who loves us with all of our heart. We have faith in a God who is just. We have faith in a God who knows all things, sees all things, and hears our pleas and prayers.

Which makes it hard to explain the "whys". I don't know why this happened for Quinn or our family. I don't know why any baby should have to undergo such a thing. But I do know that if I continue to go down that road and question all of the bad lots in life, then all I will become is bitter and broken.

This much I know. We live in a fallen and broken world where bad things do happen. Bad things happen to great people or sweet little babies. Family members are taken from us too early, children get sick with unfathomable illnesses, and loved ones deal with intense pain and suffering.

BUT I know that in the midst of that suffering, often comes good things. Lives are changed for the better, people are made new, great transformations occur. It stinks (that's my biblical term) that it's often at the cost of something terrible happening but sometimes that's just the way it is. I can't explain it. I'm not a scholar of the Bible nor a pastor, although I'm not sure it would matter if I were. I am sure they question the same things.

And I also know this much - there was a period in my life where bad things did happen and I didn't know God anymore or have a relationship with Him. And the suffering was worse. I DID grow bitter. I made even more mistakes. I became someone I didn't recognize or our family didn't know anymore.

Now that God is back firmly in place living in my heart, the suffering is that much more bearable. The sweet things in life are that much sweeter. The days are brighter.

And on the darkest days? God pulls back just enough of the curtain so I can see the promise of the light.

Oh, Ryan and Quinn, when you commit your life to God, He doesn't promise any easy road. Not everything will be butterflies and rainbows. But He does promise He will always be there, walking beside us, and carrying us when we need it. He hears our prayers, and although silence may follow for a period, they are being answered. His answers may be a little bit different than what you and I had in mind, but they are always for the best.

I know that doesn't really answer the question of why things happen. Quinn, I wish more than anything I could give you an answer for that. Please, please never ever question God's love you for you  because He gave you this particular heart challenge. I don't even want to venture out there and speculate why.

But I will say this - sweet girl, your heart story has touched so many lives already and I fully believe that it will continue to do so. People who have never prayed before, prayed because of you. That is HUGE. It has shaped this family and given us an "outward perspective" when we may have tended to drift towards the "inward". Instead, we've learned how improtant it is to serve others as we've been served, to bless others as we've been blessed, and to pray for others as we've been prayed for. Mommy and Daddy may not have gotten involved in blood drives, heart awareness groups, fundraisers for hospitals, or other means of serving if it hadn't been for you. People have been blessed because of you! 

So while it doesn't seem fair that you should have this, we had a decision to make:

1. We could live with the resentment of the diagnosis and then the repercussions of the fear, bitterness, and loneliness of a life without God OR

2. We could take life as it comes, thank God for the miracles of technology and amazing medical staff, and be forever thankful for the grace and mercy of so many loved ones and friends who continue to lift us up.

And this is most important... while yes, this is an immense challenge in our lives - it is NOT our entire book, it's simply just a chapter. Heck, it may turn into 2 or 3.

But it does NOT define us, it does NOT define you, Quinn. Our lives have been blessed beyond measure. God has shown us so much grace in our life together. Your daddy and I both have wonderful jobs, we've been able to move you guys to a great neighborhood of loving people, we are surrounded by the most amazing friends, and we have YOU.

The two of you, my sweet Ryan and Quinn. The two babies that I never thought we'd be able to have. That my little friends, is the definition of grace and blessing.

"But because of his great love for us, God, who is rich in mercy,  made us alive with Christ even when we were dead in transgressions--it is by grace you have been saved.  And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus, in order that in the coming ages he might show the incomparable riches of his grace,expressed in his kindness to us in Christ Jesus.  For it is by grace you have been saved, through faith--and this not from yourselves, it is the gift of God" Ephesians 2:4-8

With all my love,

Mommy




 

 
 
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