October 23, 2009

Hope in the Midst of Tears

I am terribly sad right now, crying after learning about another terrible loss of a baby with Congenital Heart Disease. As a heart mom, I am emotionally vested in the journey of these heart families and I partake, like it or not, in both their joys and sorrows. Today this family has experienced the greatest loss, that of their beautiful son Aiden and maybe in this moment of darkness, temporarily their faith in God. "Faith does a whole lot doesn't it?" they wrote disheartened as they shared their devastating news.

Have you at times felt betrayed by God? Abandoned? Maybe even wondered why he was punishing you? Wondered why he permits suffering? If he will ever intervene? If he cares? If there is hope for dead loved ones? Will we ever see them, feel them, hug them again?

Some biblical servants of God in ancient times, felt abandoned by God. Even Jesus for a moment felt forsaken as he clung to life on the torture stake. It is most definitely an impotent and destitute feeling, like walking in the 'valley of deep shadow'.

After Alexa's diagnosis, I too felt betrayed by God. I could not pray to Him for days, maybe even weeks. Well, I did pray but they were superficial prayers just giving thanks with my children, for our food, life, etc. But I could not pour out my heart to God like I was accustomed to. I was ashamed to feel this way. I was embarrassed to tell God how I felt. Yet, I knew he already knew. I knew he was waiting for me to reach out to him, because I know he cares. Also, many times in the NICU I felt desperate and hopeless, reduced to basic survival, hanging by a thread, sometimes feeling like I was spiraling away, losing my hope, my faith my grip on life and out of God's hand. And really nobody that has not experienced this level of stress and sadness can even begin to understand. You are reduced to almost nothing, nothing but dust within a raging storm.

Although my heart was broken by the news and or my times in the NICU/PICU, I knew that God was not the cause of my problems.
James 1:13 - "When under trial, let no one say: 'I am being tried by God.' For with evil things God cannot be tried nor does he himself try anyone".

And this comforted me. God was not to blame. After the diagnosis I was not able pray until I was one day made to read and meditate on the story of the Widow of Zarephath (1 Kings 17:8-24) only then was I able to break my silence with God. She was a very poor widow living with one young son during a time a famine. Yet the prophet of God, Elijah was sent out of his way to seek refuge and food in this poor woman's home. I wondered why her? Why not send him to a more stable home? Why was she being asked to do more, to give away the only food she had left, when maybe another family could have better hosted and cared for the prophet. Yet she was blessed for her courage and faith and God was glorified through this process. She was blessed because God promised that her food would not finish and it didn't.

While the prophet was there her son suddenly got ill and died. This seems to be more than she can bear and she reaches her breaking point. She exclaims to Elijah " What do I have to do with you, O man of the true God? You have come to me to bring my error to mind and to put my son to death." Even though she had witnessed a miracle, and had been fed by the hand God, she still had her moment of weakness and doubt. Despite her faith, she feels like God as forsaken her and was punishing her. Even Elijah asks God "O Jehovah my God, it is also upon the widow whom I am residing as an alien that you must bring injury by putting her son to death?" After much pleading Elijah is able to bring her son back to life!!! As he hands the living child back over to his mother she remembers her faith and the mercy of the Lord and cries " Now by this I know that you are a man of God, and that the word of the Lord in your mouth is truth." God does not leave her alone, once again he hears her prayers and provides deliverance. Even when she thinks he has forsaken her and there is no hope. So although, I felt weak and like I could take no more, God permitted not caused me to experience this situation. And through this, with God's help, I have gained greater strength and faith knowing I can overcome anything that comes my way.

Although God, may not intervene miraculously today in most instances as we would like, it is comforting to know that God does not "take" children from their parents as some have been told. It is not his will to make people die and take children or family from their loved ones. The Bible says:

“Far be it from the true God to act wickedly, and the Almighty to act unjustly!”- Job 34:10

For example, although the earth produces ample food, some children die from malnutrition from selfish political leaders and commercial elements, others die in accidents just like adults as

Ecclesiastes 9:11 says: "Time and unforeseen occurrence befalls them all."

meaning we can all become
victims of unfortunate circumstances like being at the wrong place at the wrong time. Other children are born with physical or mental defects, sometimes these are induced by parents bad prenatal choices but in many cases it just by chance as is the case with many babies born with CHD or other defects, or for those who become ill sometime after birth. God does not cause birth defects or illnesses. He created a perfect human pair, with the ability to bring forth perfect children in their own likeness. The sin we inherited from Adam carries with the potential for physical and mental defects and sickness and eventually death.

But thankfully, God lovingly extends to children the benefits of Christ's ransom sacrifice and he promises and provides this hope regarding death:

Isaiah 25:8,9 " He will actually swallow up death forever and the Sovereign Lord Jehovah will certainly wipe the tears from all the faces ... And in that day one will certainly say Look! This is our God. We have hoped in him, and will save us. This is Jehovah. We have hoped in him. Let us be joyful and rejoice in the salvation by him."

John 5:28,29 " Do not marvel at this, because, the hour is coming in which all those in the memorial tombs will hear his voice and come out, those who did good things to a resurrection of life, those who practiced vile things to a resurrection of judgement."

John 11:25,26 "Jesus said to her, 'I am the resurrection and the life. He that exercises faith in me, even though he dies, will come to life; and everyone that is living and exercises faith in me, will never die at all. Do you believe this?'"

God has such loving concern for bereaved ones as he says:

Psalms 146:5,6 "Happy is the one ... whose hope is in Jehovah his God ... The fatherless boy and the widow he relieves."

This applies to of course anyone who has lost also child or anybody else to death.

And let us remember that he himself lost his child Jesus in death for 3 days. For the first time ever, Jesus did not exist not in spiritual form nor in human form. It must have been very painful for God to see his son unjustly suffer and die. And we can have this comfort that God knows how we feel as we watch our children suffer and sometimes maybe even die. We however, if we had the power, would instantly change our situation if we could, God however, had the power to stop the suffering and death of his Son, but he, actually the both including Jesus, chose to endure this painful death for the LOVE of humanity. To give us another chance at life. To give us hope of a better future.

"For God loved the world so much that he gave his only-begotten Son, in order that everyone exercising faith in him might not be destroyed but have everlasting life."- John 3:16

Let us remember that God is the giver of all things good not bad.

"Every good gift and every perfect present is from above ...." - James1:17
People who suffer should not assume they are being punished by God. Of course however, those that violate godly standards of livings do experience bad effects. Like you reap what you sow. But in other instances, bad people may seem to prosper for a long time. In contrast, Jesus Christ, who never did wrong, was cruelly mistreated and put to death. So in this system of things prosperity should not be viewed as proof of Gods blessing nor should adversity be considered proof of his disapproval. The day of accounting with God will come, and at that time he will punish the wicked, destroying them forever but the upright ones, many of whom have suffered adversity will enjoy perfect health and a generous share of earth abundant produce.

Proverbs 2:21,22 The upright are the ones that will reside in the earth, and the blameless are the ones that will be left over in it. As regards the wicked, they will be cut off from the very earth, and as for the treacherous they will be torn away from it."

Revelation 21:4 "And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away."

Psalms 37:10,11,29 - "And just a little while longer, and the wicked one will be no more; and you will certainly give attention to his place, and he will not be. But the meek ones themselves will posses the earth, and they will find their exquisite delight in the abundance of peace. The righteous themselves will possess the earth, and will reside forever upon it."

It is a wonderful promise of God, a world without death, suffering mourning nor pain!!! And like we read the hope above about the resurrection of those dead loved ones where will be able to be with them again.

I never intended to use my blog as a pulpit to share my faith. But at least this once, I felt the need to share these beautiful truths with those that are suffering and yearning for a better life.
Know that you are loved by God and he is not the cause of your pain. Instead we have an enemy the devil who does inflict much suffering on humankind.

If you would like to learn more about why how permitted suffering and if it will ever end go here. If you would like to more about things discussed in this post please go here.

I also would like to conclude, what I'm sure will appear to be a very long post, with a short motivational illustration for those of those of us who are going through some type of trial (which is many of us):

The only survivor of a shipwreck was
washed up on a small, uninhabited island.
He prayed feverishly for God to rescue him, and
everyday he scanned the horizon for help, but none seemed
forthcoming. Exhausted, he eventually managed to build
a little hut out of driftwood to protect himself from the
elements and to store his few possessions.

One day, after scavenging for food, he arrived
home to find his little hut in flames with smoke rolling up
to the sky. The worst had happened! Everything was lost! He
was stunned with disbelief, grief, and anger. 'God, how
could you let this happen to me?' he cried.

Early the next day he was awakened by the sound of a ship
that was approaching the island. It had come to rescue
him. 'How did you know I was here?' asked the weary man
of his rescuers. 'We saw your smoke signal,' they replied.

Moral of the story: It's easy to get
discouraged when things are going bad, but we shouldn't
lose heart, because Jehovah God is at work in our lives, even
in the midst of pain, and suffering. Remember that, the next
time your little hut seems to be burning to the ground.
It just may be a smoke signal that summons the grace of God.

May we all find comfort and hope in the midst of tears
knowing that God is faithful and will not let us endure more than we can handle,
he will provide escape.

Most pictures used in this blog post taken from the Watchtower Bible and Tract Society.

October 20, 2009

Reason # 1, 773, 262 why I love my husband

My dear hubby doesn't know this, but last night I fell in love with him all over again.

As I laid in my dimly lit bedroom, ceiling fan humming and baby crying beside me, the love of my life walks quietly into our room to find out why the baby had begun to cry.

"She want's more tee tee (meaning to nurse)" I say, in a kind of defeated sort of voice.

He knows I have been sore from her wanting to be latched lately, not just for nursing but by her using me as a pacifier.

Without another word, he gently picks her up, and sits at the edge of our bed rocking her back and forth as he softly explains she can't always use the "tee tee" to fall asleep. He begins to sing her a sweet made up little song about saying goodbye to the tee tee.

I love nursing my daughter but thoughts of weaning have began to enter my mind. I'm not ready to do it quite yet as clearly neither is she, but as he sang her that song I couldn't help but contemplate that in the foreseeable future this beautiful journey may be coming to an end.

As I look over at them, I could see the back of his and her silhouette. She gently begins to lay her head against his shoulder and her little arm falls to the side. I see her go from rigid and upset to peacefully melting away into her daddy's arms.

I look at them

and I am in love with both.

I think of how safe she feels in his arms,

about what a great, patient, gentle and loving father he is.

And I cannot help and think about our Heavenly Father,

about how much He loves each one of us

and how good we feel in His arms

when we allow ourselves to be comforted by Him.

And so I lay in my bed

with a full heart

filled with joy and gratitude

for the love that surrounds me ...

both from heaven and on earth.

Thank you to my angel Gabriel for being more than any women would ever want and deserves. For our beautiful life, for you.

Love Always
your wife, mm.

October 19, 2009

Belated Cardiology Update

Here is a belated post about Alexa's cardiology appointment on Monday, October 5th.

Every appointment starts off with filling out new paperwork on changes, updates, etc. They take her blood pressure, then she gets an EKG. At this visit they were unable to do the EKG because the stickers kept falling off, the reason, she had a bath and baby lotion all over her body before the appointment (usually I bathe her at night so we hadn't had this problem before). After many tries, rubbing her down with moist towels etc. the nurse checked with her doc to see if it was okay that we skipped this portion of her exam. He said it was okay so we moved on. Next she checked Alexa's O2 levels. The first readings were 71, 72, I was very sad but after the previous cardiology appointment I was prepared for bad news with her sats. The nurse said she would retry but wanted to get her weight first. She weighed 21.4 pounds and is 30 inches long. She then went back to checking the sats, this time however, she taped the pulse oximeter to her wrist, it quickly read 79 and pretty much stayed there. I was SO relieved! Alexa, has also become very vocal about things she does not like them doing anymore, definitely a difference from past appointments, no more prodding and poking or strange faces trying to examine her please!

Then we waited for her awesome doctor, Dr. P, he specializes in both the plumbing (structural) and electrical side of the heart. He is young but very sharp and intelligent. We met Dr. P while Alexa was in the NICU, we really liked the way he explained things, he took his time, drew pictures, sat down, was not rushing and didn't get up until we said we were done asking questions and understood.

I had many questions for the doc at this visit. I wanted to know more about the echo they had done. He said her shunt was still wide open and the pressures gradients were normal, equal on each side both through her shunt and her pulmonary artery. He explained it to me that since they are both arising out of the right ventricle, it's kind of like the Niagra Waterfalls, on both side the Canadian and the U.S. side they are both arising from the same source so the pressure with which they fall is the same.

There are also some mommies I have met online with babies that have had Rastelli's and they are now having enlarged conduits. Since Alexa is scheduled to receive this surgery I wanted to know what would cause an enlarged conduit. For the benefit of me, so I don't forget and for those mommies that may read this, I will try and explain what he said as it made perfect sense. He first told me to think of a frozen piece of meat you take out of the freezer, basically what the conduit it is, he told me to think about how it thaws and softens out. Now they use/place this little piece of defrosted meat/conduit as the pulmonary artery. He says, this little piece of meat is basically dead because it doesn't grow as all the other tissue will. So now he told me to think of it as a sock. A new sock has some elasticity and as you wash and wear it returns to pretty much it's original size, but over time the sock loses it's elasticity and you have a wide shapeless sock. That is what he described happens to the conduit. Because it is non living tissue, it does not have elasticity. And so, as the blood pulses through the conduit, it receives tiny tiny tears into it but it cannot reshape itself so it becomes enlarged over time. He told me however, that with Alexa being older, hopefully around a 18 months for her surgery, she should be able to receive a larger conduit. He said the larger the conduit you are able to place from the beginning, the lesser the chances of the conduit enlarging becomes an issue. This has to do with the diameter of the conduit. He said the smaller the diameter, the bigger the difference or the more it affects the blood flow, if it becomes enlarged or how he mentioned more commonly stenosed (narrow). So he said he feels this will be more of a non issue for Alexa, but would instead be more worried about the conduit becoming stenosed. So this will be something they will be watching for after surgery.
I wanted to share this on here because he has this great ability to explain things using simple illustrations. And so I can totally visualize and comprehend what he says. He always explains things this way and I so I can't help but think that not only is a great physician but a great teacher. As I walked out to my car after this visit, I couldn't help but be reminded of the Greatest Man that ever lived, Jesus Christ. Jesus left people dumbfounded by the way he taught. During his Sermon on the Mount he used simple everyday things to teach people about the Kingdom of God. And of course, I am in no way saying that Dr. Papez is Jesus, (as I am sure he does not declare to be so) he just happened to make my heart and mind feel full with discernment, knowledge and understanding and made me think back about how awesome it might have been to be in Jesus' presence and personally be taught by him. (Of course, however, we have the Bible which contains his teaching for the benefit of many to this day.)

So anyway, we are to go back on November 20th, he wants to keep checking her oxygen sat levels. This will determine when we move on with surgery. I really wanted to take pictures of Alexa with him as he is an important person in her life both he and her surgeon. I regret not taking these earlier since Alexa has now become apprehensive about who she let's carry her. He said that she will not begin to love him again, until she is about two and half years, I agree but I still got some shots. Thank you Dr. P for taking great care of my babies heart!

Oh, and I forgot to mention that he also took Alexa off her Lasix medication. I just happened to comment that Alexa had been constipated off and on lately and he immediately made the connection between the Lasix and the constipation. He explained that now that Alexa is eating more solids and drinking less milk her intestines need more liquids to help absorb and digest the nutrients and so the Lasix being a diuretic was aggravating this problem. The amount of Lasix Alexa was on was so minuscule (mostly used as an extra safeguard) he figured that it was not really benefiting her cardiovasculary and instead was negatively impacting her digestion. So he waved his wand and did away with it and now Alexa and I are happier for it.

October 15, 2009

Crying wolf and motherly correctness

Last night, as I read a book to my beautiful children, Alexa decided to scoot away from me a bit and to the edge of her nursery door. We were all pleasantly enjoying the story when I just happened to glance over at Alexa, I was about to turn away but noticed something on the floor had caught her eye. That something was a large Wolf spider! And to make matters worse, in that split second her tiny hand began to encircle the giant spider.

Of course I did what any insect fearing, baby loving mom would do and proceeded to shout:

"NOOOOOOOOOOOOOOOO!!!!!!!!!" at the top of my lungs.

I managed to scare everyone present including the spider as it tried to hide.

I think Alexa might of just barely touched it but I cannot believe how close she was to picking that thing up and maybe even gone for a taste ... had the spider let itself.

I've read conflicting stories about these spiders, that they are venomous and they're bite hurts but is not lethal. And that they are good spiders, because they eat other bad spiders and insects.

Either way, we cannot have them roaming our home. And I cannot believe how close she got. Of course those stinkin scorpions are still on my mind too, so my nerves are on edge.

My older daughter Y adequately describes it looking like a (miniature) tarantula as they are hairy looking. Not a pretty sight!!

Thankfully my angel (hubby) was home and he quickly came to squish it goodbye. He is my hero! (Besides Mr. Neighbor Man of course).

Now on to a nicer story and pictures.

Hubby asks yesterday: "What is wrong with the baby, why is she cranky?"

Me: "She is hungry and tired."

Even I am amazed how accurate I am at times. =)

October 13, 2009

Thank you to Mr. Neighbor Man

Oh, Thank you! Thank you Mr. Neighbor man! Just want to say, how happy I was to see you today!

An unidentified neighbor that lives somewhere around the corner happened to be walking by my home today when I found a disgusting creature in my garage. Yes, ANOTHER (BIG) scorpion! Why oh why are they popping up in and around my home now after all these years? We've lived here about 8 years and never saw one until last year and now we have seen close to 10 in the last year and a half. It's awful to think about. I hyperventilate when I see them. I HATE squishing. I saw it run under my van as I opened my garage door, I must of freaked it out because it was running in circles with it's tail pointed up. I got the heeby geeby's and put Alexa in her car seat, pulled out my van hoping it was maybe hiding behind a wheel. I then got off my van while in the drive way and ran to my neighbors house as I saw his truck was there but heard the vacuum going so no response to my knocks at the door, plus I was a little bit embarrassed to keep insisting. So I went back to my house, grabbed a shovel, and found the little stinker hiding in a crack, and that is when I saw a neighbor man and lady walking towards me and asked him for the tiny favor of killing the scorpion for me. He did and told me I had nothing to be ashamed of, thank goodness. I then laid a brick on the scorpion to make sure it wouldn't escape until my hubby could get home and dispose of it. Have not been in my garage since.

Of Hope and Prayers

Although, I am grateful that Alexa and all my children are tonigth safe at home and peacefully embraced in sweet slumber, my heart cannot help but ache and worry for someone else's children right now. I am a heart mother after all, and these babies, are well heart babies, and they could be mine or yours. And I have sat where these parents are sitting, and I have cried the same tears and made the same supplications to God. And tonight I think of them baby Scarlett and baby Aiden and baby Hope who is thankfully doing better. I think of you, and your mommies and daddies, and family. I think of the battle you are facing right now, as I type these words, the battle for your life, and as I look at your picture of a tiny baby in a bed fighting to survive, it just breaks my heart. It makes me tired, it makes, me weak, it makes me mad and sad, and depressed, and terrified and thankful, thankful that you have a fighting chance, and thankful that although you feel as parent you will never get through this, you do. And thankful as well, that we have been created in God's image because we are able to show and feel love and compassion for our fellow man, our fellow heart families. Please know, KNOW, that you are in my thoughts and prayers tonight and everyday until your babies are safe at home and peacefully embraced in sweet slumber, where they belong, where all children and babies belong.

October 1, 2009

Work of Heart

I've been uninspired to write lately. I've thought about many things I want to say but they are all random and not legitimate enough to begin and fill a "new post". But since it is a goal of mine to track Alexa's growth via this blog, I can start with that - Alexa had her one year well check today (about a month late). She weighs 20 pounds and 15.5 ounces - so pretty much 21 pounds had she finished her morning bottle =). She is 29.75 inches. Doc said she is right on track about 50% percentile, not bad for any baby and great for a heart baby! I don't very much believe in taking my kids to "well visits" but I went mostly because she needed her flu shot. She is such a little trooper, she didn't even cry one bit. I was impressed and so was doc. On Monday, she has her cardiology check up. Really looking forward to talking to her doc about a few of my concerns and getting more info about her echo and of course seeing what her o2 sats are doing. So overall, just very happy she is growing well and no major health issues to report. She is getting two new molars already! Oh and how can I forget, she took her first steps yesterday!!!!! I am so proud of her!!! Way to go little one! I'm sure she will be walking very soon. Time to buy some cute shoes.

Now other random thoughts, not sure if you know but I use to be a very active photographer, with my own thriving business I loved.  Since becoming a heart momma, I've kind of neglected my business. I just threw my new passion into learning all about CHD but guess what? I miss it. I'm still out there but have chosen not to do much work right now, for one because I thought Alexa was having surgery this fall and for two because my other babies, my cameras, are need of repair. But I also miss the extra money as it was our spending money which we've had not too much of lately. So it is my mission to fix my babies so I can return to my not forgotten but abandoned passion, my work of heART.

... And actually, if I am being really honest with myself, I'm not sure I would of been able to handle being around babies had something happened to my baby Alexa. I needed an emotional break. So I kind of quietly retreated from my work of heart until I could again put my heart into it. Wow! I just had an "aha moment". I was incapable of photographing the way I do without my heart. I could take pictures had I wanted but not create art, capture moments and memories that people fall in love with. I'm going to get ready to this again, like I said earlier, I miss it, I yearn for it, I need it. When I am "at work" I am at home. I have fun. I enjoy it! I love it! I love meeting the families. I love capturing their love and their story.

Not sure how things will go logistically though. I remember thinking Alexa would need ONE surgery then we could get on with the rest of our lives. But it is not so. CHD, a broken heart, is our lives for the rest of our lives. A surgery looms in the horizon. I can feel it, it makes my heart beat faster, I hold my breath, I space out some times as I zoom into the future and think about our past. I remember thinking I could work my schedule around ONE surgery. But it is not so anymore ... I just have to learn to deal. I have to accept this new normal. I'm going to share one of my favorite quotes before I was ever thrown into this unknown world of CHD. I even have/had it on my website for all time because it defines my photography and I why I feel it is so important.

"Normal day, let me be aware of the treasure you are. Let me learn from you, love you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it may not always be so. One day I shall dig my nails into the earth, or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky and want, more than all the world, your return." ~Mary Jean Iron

As a photographer, you meet a lot of people who confess, they are waiting to take their professional family or children portraits "UNTIL" this or that, including mom loses weight etc. etc. etc. And truly as us heart momma's know all too well, our life is not guaranteed. We must record today, not wait until a perfect tomorrow but instead treasure today, this beautiful "normal" day before it's gone.

And talking about normal, yes, the old normal went out the window. But now we have a new normal, and it is equally if not infinitely more beautiful ........ and not because of our hardships, we would wish those away in a second, but because we could see clearly now, the good is soooo good and a normal day, perfect.

p.s. And at the top, a pic of my two older kiddos that I heart.

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