10.30.2011

Seeing Gabe's heartbeat

Before we had Gabe, we knew that his chest would remain open after surgery for a couple days (it was about 10 days, actually). I remember thinking that it would probably be hard.. But when I saw it- it was totally beautiful.

I could see my son, who had just been cut open and pieced back together, laying on a table, puffy and sedated- and there was his heart beating. I could literally see his heart beating in his chest.

It was- quite oddly- the most exciting and breathtaking thing you could ever see. Knowing that his heart was beating, was working. It was a miracle.

What caused many to look away in horror, inspired me. It made me want to lay my head near his chest to see if I could hear it better.

Just like every time during pregnancy we heard his heart beat. I knew that he was strong, he was okay.

So, seeing his heart beating. That was a miracle. I will forever treasure that moment when I saw it for the first time.

My little warrior prince, Gabe.

10.27.2011

When did life stop being worth fighting for?

Okay, I don't like to post contraversal matter on here, but since I have a downs syndrome son- I have been absolutely horrified by the fact that 90 percent of downs syndrome babies are aborted.

It makes me sick to my stomach. Maybe it's because people are under-educated. Maybe it's because they are over-educated. Maybe it's because they are just too scared to go through something that may be 'more difficult' than they might otherwise have to face... But I truly am disguisted at this fact and statistic.

It's not because I think that abortion is evil and will damn you to hell. I think that abortion is the death of a person, a life, a beautiful thing. I think it is a tradgedy and I do NOT think that it is 'okay', however, I do think that there are reasons that I never want to face, that people need to have them done.

I was reading a post the other day that a woman had posted about aborting her son with downs syndrome. She wanted feedback- and I was reading through the posts.

Most of them were hateful from people, who like me, see the beauty and perfection in the imperfections that downs syndrome brings- but don't know how to say it without condemning and damning people with their words.

Then, I read further down the page.

A woman had posted a story of her daughter, who they discovered at an ultrasound had the most severe kind of brittle bone disease that you can have. Her bones were literally breaking because of her muscles growing. She was in pain, in the womb. She would not survive delivery- and most likely would die in the womb before she made it to term. The woman had never considered an abortion in her life. She had never thought of her child being in pain, severe pain, for every second that she was alive.

The woman and her husband decided that they could not let her continue to suffer. They delivered her early. She was born already gone, her body broken like she'd been thrown down stairs several times.

As I read her story, my perspective opened up. My eyes widened at the thought of having to make THAT decision. To decide to let your unborn loved one suffer in agony, or to end their painful journey.

In this case, I realize- I don't know what I would do. I don't know how I would face that.

Now, onto abortion for other selective reasons.

I do not believe it is okay to use the system the way we do now to end life. With the accessibility to birth control, the accessibility to knowledge, how can we live with this sort of irresponsible careless neglect of the unborn's parents?

Parents are not required to go through counseling before they abort. They aren't required to see an image of their child's gestational age and size. They aren't required to see their child via ultrasound before the procedure.

They walk in, sign a form and are asked once if they are sure. Then, it's done. Life is snuffed out.

What kind of society lets a HUGE desicion that will impact so many be such a careless act?

HLHS babies are terminated every day. Parents are told that there is no hope, that the surgeries are experimental, that their babies have no chance at life. They are pushed to give up.

80-90 percent of chromosomally healthy babies with HLHS will live. Many will thrive. (If surgeries are done at a well established facility who experiences many cases a year- which there are MANY of).

40-60 percent of Downs Syndrome babies with HLHS will live. Many will thrive.

So why is it, that when we made our decision to fight for our son that we were pushed so hard to give up? From week 7 of pregnancy we were told that his life was soon to be over. From day one of his life apart from me, we were pushed to take him home and let him die.

Who have we become, as a society, that life is so invaluable that we ought to not fight for it?

Any mother who is forced to be barren will tell you that they would fight for the life of their baby. They would grow sick at the thought of a mother giving up so easily on their little life. At the tiny person who could be.

Any mother who has walked a day in the shoes of a mother of an extremely sick baby or child would tell you that they would rip out their heart for their child if they could.

Any parent, mother, or father who has looked at their child and had to imagine or actually had to tell them that their life would soon end... Those are the parents who know what life is valued at.

Nick and I don't try to look into the future right now, not too far. Far enough to plan... Not far enough to fear.

We sometimes mention the small, scary fact to each other that our son will fight through all of this, just to find out when he is 15-30 years old that his heart will no longer sustain him... And because of his Down's Syndrome he will not be able to get a donated heart. We don't like to think of it, but it stays there in the back of our minds.

We wonder- did we make the right decision in fighting for our son?

Yes. Undoubtably yes. You see- Jesus fought for us.

He died on the cross not just for those who will proclaim His name. But for the broken, the ones who will proclaim his name in hatred.. Because, even though some will die... We are all worth fighting for.

What would Jesus do?

Jesus would give us EVERY chance he could possibly give us.

So, if you are facing the decision to fight for your child- for your family member, for your marriage... I hope this helps you in some way.


*** Remember, most of these thoughts are my young, 22 year old mother thoughts. They are not from years of thought processes and prayer, but from our concentrated years of prayers and the beliefs that have developed. ***

10.25.2011

Burdened

Today, just a few minutes ago- we took Gabe to the surgical waiting area to have the doctors take him into the Cath lab. We are praying, hoping, believing that this will help him get off of oxygen so we can finally take him home.

I never cried when Gabe was taken before. Today, I choked back tears before they could fall. Probably because the attachment has been difficult to avoid the past weeks, watching him become himself, developing his personality very slowly and surely underneath my eyes. I kept thinking, I should have waited in his room. Handing him to the doctors who were very quickly going to be putting him to sleep- intubating him, and preforming a procedure that could be life threatening if done wrong... It took a lot of courage to let him go.

I think it shocked me a bit to realize that.

But the past few days have been difficult all on their own.

Yesterday, Nick's Aunt Kelley came and talked with me, shared some visions and some scriptures with me. I needed it, the encouragement and the fellowship of knowing that I am not alone in these struggles and being reaffirmed that the weight is not on my shoulders to fight these personal battles.

Lately, it seems like my dreams are constantly about Nick and I, our marriage. They are nightmares most nights, about us falling apart, Nick stopping caring, or me leaving. It's awful. They are so real in my subconcious that I wake up and reach over to him, needing to know that he is still there and he still loves me...

It's silly, that our dreams can be the place where evil messes with us the most.

Last night, however, I had a good dream again. Finally. After weeks of nightmares, I had a good dream about our marriage.

I think that Satan attacks this, because marriage is the one thing in my world that I know where I stand. I know that marriage is forever, and I have been blessed immensely with a man who feels the same, loves me forever, and committed to continue falling in love with me until one of us kicks the bucket :).

I would like to say that I am superhuman and I don't struggle with negative thoughts, but I am weak.

Sometimes you have to head back to those childrens songs- from nursery class.

"I am weak yet he is strong, Yes Jesus loves me!"

The reason we have to acknowledge our own weaknesses is not because we are pitiful, but because Jesus is the one who gets to fight for us, we have to lay our burdens upon him. He already took the pain and died for them, it's pointless to drag ourselves through the mud when we have already been freed from these pointless chains.

If you aren't laying it down for your Father- why do you think he died in such a terrible way? Do you not trust him to relieve your burdened heart?

Something to think about.

Please be praying for me, and let me know what you need prayer for. The people of God are called to pray for one another, to lay their burdens down, and to constantly remind each other of the things we should already know..

<3

10.22.2011

Umm... Satan- who invited you?

I've struggled with mild to severe depression most of my life (since I was about 13-14. I've tried medications briefly, but they just don't work like Jesus works. Medications often tend to make things worse, for me- personally. I know that they can and will help many people, and there is nothing wrong with using them- they are tools that God has given us to assist us.

A major part of my depression tends to happen when I just have too much time to focus on myself and not enough time to focus on others. It gets worse when I'm indoors, but part of it makes me want to stay indoors constantly (counter productive). It happens when I don't get enough excersize, eat right, or get enough sunshine. All of those things help. It helps to have places to take a drive to and relax with my family at... But all in all, depression is something that can happen at any time, for any reason, and it's not simply because I am too self focused... It's also because of hormones, and because of the fact that our lives have been very, very up in the air lately.

My depression tends to smack me in the face so hard that I don't see it coming. And the only thing that helps is time and prayer, and Jesus.

Seriously, Jesus heals depressed thinking. Speaking Jesus' healing over my mind and calling all evil or terrible thoughts out of my mind, it truly helps. It doesn't always work immediately, but always, within a few days- I feel at least more able to mentally rise above it.

Right now, homesickness is playing into things quite a bit. Also, having no idea when we are going home, or what is going to happen next... And the future after this first surgery.. All of that is contributing.

Well, as you probably guessed, my mind and Satan are conspiring against me the past few days. It's been difficult, but I know it will pass and the sun will again shine on my heart and break up this little bout of sadness.

If you don't hear from me lately, it's because I am fighting my own little battle right now. But, it's not terrible and it's going to pass. :)

Thank you for the extra prayers for my mind and well being tonight. I appreciate you!

10.17.2011

Inspired

Leaves are falling off of the trees here in Seattle. First they turn a miraculous orange, then they finally begin their fall to the ground, where lately, Judah and I are watching in amazement.

Life truly takes on a new meaning when you are experiencing it with your 18 month old. Judah's fascination with all things outside is inspiring. We took a walk the other evening, after a particularly stressful day at the hospital- and Judah melted it away. He took a leaf from the ground and threw it in the air as hard as he could. We watched it float to the ground together, and it was almost like we were in a normal life. Like we were just Mommy and Judah- and nothing crazy was going on. Our lives were temporarily perfect for that moment.

Then, Judah took a leaf out of a puddle of mud and rain water and shook it in my face vigorously. I laughed and shook it back at him. His big grin and bright blue eyes don't leave room for any annoyance at the mud that became plastered to my glasses and hair. Life is wonderful.

Gabriel and Judah have not had much interaction. Judah has seen me hold him a few times, and he knows he is a baby... But it's not going to click until that baby is home with us in Boise. Then, Judah will realize that he's our baby.

Judah has a doll now, which his father hates, but is a much needed practice baby. We rock the baby doll to sleep and sing it songs, give it a binky and are sweet to the baby... Until Judah gets bored and throws it on its head.

I bought this doll on purpose, because I hoped that in some way it would slowly and gently introduce Judah into the concept of a baby in his world. I think it's becoming apparent that the baby concept is going to have to make it's own grand entrance... And how it will go, I am unsure.

Gabe will be coming home eventually (we hope and pray), and that eventually could be soon or it could be months away. But as it is now, he will have at least a feeding tube and most likely oxygen. I think the concept of a baby brother is difficult enough with out adding in the 'extremely fragile' part. Of course, you have to be gentle and careful with other babies, but what Judah won't realize is that this baby is already changing Judah's life tremendously.

First, we came to Seattle where the Ronald McDonald house is our 'home base' and Judah has been back and forth to grandparents and aunties houses from time to time while we attend to Gabe. Not only that, but when Gabe finally does get to come home, Judah's playground days will be limited and sanitized.

Judah has been a greats sport in all of these changes. He has been our joy when it's hard to see past this situation. When we run low on hope, he keeps us inspired.

For now, we continue to take this journey day by day, and we are thankful beyond words for our Judah and our Gabriel.


JUDAH 18 months:

GABRIEL 7 weeks:

10.08.2011

Prepared?

Sometimes I wonder if God was preparing us for Gabe when Judah was going through his difficulties... and then sometimes I wonder if Gabe is preparing us for Judah.

When you become parents, there is no manual. There really ought to be, but unfortunately you can do everything right and it will be all wrong for your child.

It doesn't matter how many green vegetables your child eats, he still is going to scream bloody murder all the way through the checkout line or when you go to eat at a restaurant.

Judah cried and cried and cried and cried and cried for his first 4 months of life. He never stopped crying except when he was passed out from pure exhaustion.

He was starving, but couldn't eat. He was eating, but couldn't breathe. He had gas, his formula constipated him, he just was sad. We bounced him and bounced him and bounced him. We did everything we could think of to get him to stop crying. Nothing ever worked for more than a few minutes.

Judah did not have colic, he was starving due to difficulties that no one seemed to be able to diagnose. Finally, when he was so small and quit eating entirely- we knocked on our doctors office every single day for a week. We were terrified. We didn't know what was going to happen to our son. No one could tell us what was wrong or how to fix it. All we knew was he was withering away before our eyes.

Finally, someone found the answer and the crying slowed. Whining still happened, but the crying.. The constant unstoppable crying ended.

We thought that was the end of the world. It was the end of the world- for us. It was the scariest thing you could go through, being helpless to save your child. Being helpless to fix him.

When Gabe was diagnosed with HLHS- we were helpless. All we knew was that his only option was surgery. It was out of our hands. It is all out of our hands. We knew that we could not save him. We knew that we could not fix him. We knew that we were doing nothing wrong. That it was not in our hands- it was in God's and the surgeons hands to save him.

Now, in comparing those two situations... Which one was scarier?

Judah.

Judah scared me more than Gabe's situation ever has. We were prepared to be helpless with Gabe. We knew we couldn't change what he has to go through to get a chance at life. The weight was off of our shoulders.

In facing the two circumstances again, if we had not experienced what we did with Judah- we probably would be wrecked. We probably would be out of our minds with this situation. That's normal.

But I honestly thank God for Judah's circumstances- because they prepared us.

And now, we get the parenting skills through all the things we are going through with Gabe to use on Judah. Patience, slow to anger, loving, and just enjoying him more than ever.

Life comes at you fast. So you suck in every day, the entire day. You appreciate the bad along with the good, because they both teach you. I have learned so much about love and trust. Trusting God. Trusting a surgeon to do his best, with God's help, to save my son for just a little longer.

Thank you Jesus for preparing our hearts for Gabe's heart.

10.05.2011

You're better than drugs...

Last night was scary. I was having a good time since Gabriel was so awake, sitting up and looking at me... But he was breathing so quickly and heavily. His morphine wean hasn't been quite as easy as we were hoping it would be.

Last night was one of those moments where fear got the best of me and I stared helplessly while waiting on the doctors to order and bring up a breakthrough dose of morphine. 30 minutes of watching him struggle to get air and they finally brought it up.

Poor Gabe.

Hoping today is easier- since we slowed the amount of weaning. Slow and steady... I suppose.

<3

10.04.2011

Groaning and Growing :)

I guess the main thing that has been on our minds lately is how blessed we really are. Gabe is perfect in our eyes and beautiful and ours. He is doing well despite all the odds stacking against him.

I think our main fear is the very huge lack of hope we were given for Gabriel's future. I haven't been able to find anyone with the heart issues that Gabe has that is still living. There have been a few babies with similar defects, but they have passed away. So I guess it would be normal for my fears to be elevated looking into the future of our little man.

We were lucky we were so expectant on God in the first weeks (as we are now). If we hadn't been, Gabe would be gone. I believe that entirely, because they didn't want to operate on Gabe even when his heart function had improved to near perfection. They didn't want to take the risk. We were almost unaware of the fact that our son was born with poor heart function on top of his HLHS and AV Canal Defect- and Downs Syndrome. We just knew that he needed to be fixed- so we pushed for it. We hoped and prayed for it.

Day three, I sobbed all night long. I cried in the middle of the night out to God. "Please let me keep my son. Please save him." From that moment, I had a very amazing peace that stretched across my life. My husband's peace came the next day.

Our son's heart function improved drastically. It was truly a miracle. The heart medicine he was on may have helped, but they actually don't think it's the reason. His heart was healed- so much that they could no longer use it as a reason to deny him surgery. Our prayers were answered.

We were given more time.

...........................

In other news- Judah has turned into a complete Mommy's boy. It's shocking in every way possible, because Judah has never been a huge fan of being rocked or cuddled- and suddenly he requires being rocked to sleep. He doesn't want me to be out of the room and will cry hysterically if he thinks I am leaving. I didn't expect it. It's kind of nice to get a little neediness from Judah... He has never been the type. He has wanted to be independent since he was born.

He is learning so many new words. Bankie (Blankie) and ite Pease (bite please) have been a couple of my favorites. He still does his 'nonie nonie no." when he doesn't want something. He also shakes his head no for no apparent reason (until he is dizzy).

He is a master of the up on stairs, but going down is a different challenge. He thinks he can, but he skips steps and steps where there aren't any.... It's a tad frightening.

He has grown substantially since we've been here, but unfortunately just taller and not much rounder. He is inbetween 12 months and 18 months clothes, which is unfortunate since those sizes don't exist.

Wish there was a pause button for Gabe or for Judah. It would be used quite frequently!
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