Thank you!

I just wanted to thank all the family and friends who have loved us so well over the last few months. Everyday I'm overwhelmed with the love that's poured out on my family. I promise that I have read every letter, every blog comment, every Facebook message or comment, every email, and listened to every voicemail that you have sent me and they have been a great comfort to my soul. I know I will probably not have the chance to thank each and every one of you but I just want you to know that Claire, Cole and I have felt your love and prayers. 

While this doesn't ease the pain of losing Matthew, it helps us feel less alone and makes us see that Matthew's life wasn't lived in vain. You see, I know in my head that "God works all things together for good for those that love Him" but I've really struggled some days to believe this in my heart. I've had days where I'm thinking "Really God? Really?! How can there by ANY good in this?!" But then I get an email or a card from one of you telling me how Matthew's life was a testimony to you and it helps me to lift my eyes from my own sorrow and see how God is using us in the bigger picture. It's still painful, but knowing the impact Matthew had in his short 7 weeks and 2 days makes it a little sweeter. 

So thank you. 

Matthew's Life

This is the final version of the video Cole started when Matthew was first born. For those of you who couldn't make it to his memorial service, this is the movie that was shown there. I will warn you that it's very emotional, but also very joyful. We are so thankful for all the moments God gave us with our little son!

Memorial Service

Just wanted to let you know that Matthew's memorial service is on Thursday at 10 am at New Covenant. I'd love for anyone who wants to come to feel free to be there. It won't be long, we just plan on celebrating his life and laughing or crying as we need to.

When I first told you all about Matthew's condition back in January, I quoted a few verses from my favorite song "O Love That Will Not Let Me Go" and I just want to leave you with those same words.

O Love that will not let me go,

I rest my weary soul in Thee;

I give Thee back the life I owe,

That in Thine ocean depths it's flow

May richer, fuller be. 

O Joy that seekest me through pain,

I cannot close my heart to Thee;

I trace the rainbow through the rain,

And feel the Promise is not vain,

That morn shall tearless be.

Resting in the love of Christ and trusting in His promises ~Julia  

Grieving with Hope

Years ago, when I lost three of my best friends within one year, I remember playing Steven Curtis Chapman's song "With Hope" over and over again as I cried. The first verse and chorus go like this:

This is not at all how
We thought it was supposed to be
We had so many plans for you
We had so many dreams
And now you've gone away
And left us with the memories of your smile
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but ...

We can cry with hope
We can say goodbye with hope
'Cause we know our goodbye is not the end, oh no
And we can grieve with hope
'Cause we believe with hope
There's a place where we'll see your face again

This is kind of how I feel now. I've never known pain as deep as this and at times I think my heart might explode with the hurt. As I drove home from Charleston yesterday, I found myself almost furious with grief. I do trust that God works all things for good, but that doesn't mean that I'm not struggling. There are so many things that I had hoped for that will never be. I will never get to bring him home, never get to watch him play with Claire, never give him a bath, never hold him without having all those monitors and IV's in him, never hear him laugh, never really get to be his mother. I feel so cheated. We'd always known he could die, but we had so much hope after he made it through surgery and we actually thought he would come home. This past week I had started to feel confident that he actually had a chance. And then everything came tumbling down. In just 8 hours I went from laughing and being carefree to holding my dead little boy in my arms. Even now I feel like I'm in someone else's life and I'm just waiting to get snap out of it. But this is my life. The worst has happened. And I'm wondering if the pain will ever go away.

But then God gives me moments of peace and I'm able to breathe again. I'm able to be thankful for the 7 weeks and 2 days that Matthew was alive and so very grateful that I got to be there for every single day. Mostly, I'm thankful that God answered my second prayer. You see, whenever I prayed, my first request was that God would heal Matthew and let him live to be a strong and healthy boy and man. This was what I wanted most. But my second prayer was that if Matthew's life was going to be filled with lots of surgeries and if he was going to go through all the pain that came with them and still die at a young age, then I asked God to spare him and take him to heaven. I had heard so many stories of babies like him who went through multiple surgeries only to die while still toddlers and I didn't want Matthew to have to go through all that pain.

Our sweet little guy was born with so much wrong with him and I am thankful that he is now enjoying peace with God. I miss him so terribly and when I think of never seeing his cute little face again in this life, I almost go crazy with grief, but God is giving me moments of joy amid my tears. It would be a lie to say that I understand why this happened, but I'm trusting that God will reveal it to me in time. I think that hardest part about having a young child die is the wondering why. So yes, I am wondering why this happened to us. I am wondering why God would create a baby with so much wrong with him. I am wondering why God would give me so much love for a baby I only got to enjoy for 7 weeks and 2 days. But I'm trusting that this is not the end. We are grieving with hope because we believe that one day we will see his cute little face again.

You give and take away, Lord blessed be your name

Today our little Matthew went home to see Jesus. My heart is breaking and I keep thinking that any minute I will wake up from this horrible nightmare, but it's only too true. Words cannot describe the pain and emptiness I feel, yet somehow I know that God will see us through. While I can't understand it, I know that Matthew is in a better place, where he doesn't have trouble breathing and he can run and play. How I will miss my sweet baby boy...

Struggling

Today one of Matthew's doctors told me that he isn't doing as well on his feedings as they hoped and they've started to consider putting in a G-tube. The way he gets most of his feedings now is through an NG-tube which goes into his nose and down into his stomach. A G-tube would go directly into the stomach from his side and it is something we could take him home with. They've considered this because it could take him months to get up to speed on feeding himself and they don't want us to be sitting in the hospital waiting that whole time. The G-tube would allow us to go home and work on his feedings there. I would be able to give him milk directly through the G-tube when he's too tired to take a bottle.

However, we're looking at another 2 or more weeks here until that happens. His doctor wants to give him a few more days to try to improve with bottle feedings before they schedule the G-tube procedure. If and when they schedule it, it will probably take a week to get a surgery spot and then a few more days to recover. So yeah, looks like I'll be here until July.

I'm feeling kind of down with this news and wondering if life will ever get normal. I ran across a blog today of another mom who had a baby girl with congenital heart defects and her thoughts on having a heart baby are a good assessment of how I feel right now:

"It just isn't fair for an infant to come into this world having to fight as hard as she has. These first weeks of her life should have been spent rejoicing over her birth and celebrating with friends and family. She should have been at home within days and I should have had every moment since her birth to bond with and love her. Her skin should be without a blemish and without scars that display the battles she has fought. God has different plans for her. He has used all of her pain, hurt and fear for His purpose. Eventually, we will be home and we will bond as a family. She will know that she is loved immensely. Her scars will tell others of her strength and of God's Plan for her life. I wish I understood His Plan and why He has allowed our daughter to go through so much. What I have to remind myself is that even if I did know, I would still not understand it all. God refines all of us daily in many different ways."

How true. I am thankful that God knows how I feel and give me the strength to face each day with His grace. I'm struggling, yes, but I am not hopeless. "For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord." Romans 8:38-39.

Thoughts

My weekend with Jessica was wonderful! There's nothing like an old friend to help lift your spirits and do some good girl talking with. I'm a little tired from having a newborn in the room at night :) but I guess that'll help prepare me for when Matthew eventually comes home. I am so excited for Matthew to get out of here! The only hard part of having Jessica and Kirra here was the constant reminder he's stuck in the hospital. Everywhere Jessica and I went, people made lots of "ooohs" and "ahhhs" over Kirra and commented on how little she was, how cute she was, etc. Jessica kept feeling bad for me and I had to keep telling her that it was ok, I wasn't jealous :) The only thing that was hard for me was the constant reminder that Matthew can't be with me like a normal baby. You see, most of the time I forget that my life isn't normal. I get used to going back and forth to the hospital to see Matthew and when I'm with Claire, she keeps me so busy that I don't have time to think about Matthew. Every once in a while I start to feel sorry for myself, but then I move past it and just accept our not-so-normal life. But being with Jess and Kirra was a constant reminder that my life is different and it made me long for when I can finally bring Matthew home and mother him like he's a regular baby.

So yeah, that's my confession. I'm not jealous of other moms, they just remind me of how my situation is different. But don't go feeling sorry for us! Matthew is making progress every day and hopefully we'll be home soon!

(On a side note - Thanks for visiting Jess! You're a great friend and I'm glad we had that time to catch up and motivate each other :) Here's to looking like hot mamas by the end of the summer! Hehe!)

He did it!

Today Matthew took a bottle like a champ! I got to feed him my milk and he slurped it down like he'd been doing it his whole life :) He's been having problems with reflux, but yesterday his doctors started giving him Zantac, so he hasn't thrown up anymore. Before, he'd been throwing up entire feedings and feeling just miserable. He also had a swallow study and a heart Echo done yesterday and looked good on both. If he can just keep gaining ground on his feedings, then we can be home soon!

This weekend, my longtime friend Jessica and her newborn, Kirra, came to visit. We've had fun catching up while sitting in the hospital with our babies. Matthew seems to like Kirra a lot :)

We're moving on down in the world...

... which is a GREAT thing in our situation :) Yesterday Matthew moved from the PC ICU to the Pediatric Cardiac Unit, which means he is in his own room, he doesn't have heart lines and tubes in his chest anymore, he doesn't require such close monitoring, and in case you didn't notice from the pictures below, Claire can visit!!! We are so excited about this! Now he just needs to continue improving and get up to speed on feeding himself. This could take awhile, since he's been on IV nutrition and tube feeding his whole life, but hopefully we could be going home in a week or two. God is so good and we are feeling very optimistic!

Pics at MUSC

Happy Sunday

Today is a beautiful day here in Charleston! I can't complain about the place I get to live in while we're here for all this. The Aksins live in a great house right across from the beach and it's so refreshing to come back here every night and sit on the porch and listen to the ocean!

Matthew is still getting along well. There's hope that he might be moved to a regular room tomorrow or the next day! And if he does well with bottle feedings once he's there, then we might be home in a week! But that is very optimistic, so I'm not getting my hopes up too much.

If you want to see a picture of him smiling (he did it for the first time yesterday!) then go to my Facebook page.

Happy boy!

I meant to post last night, but was having "technical difficulties" :) Anyway, Matthew had his breathing tube removed yesterday (!!!) and today he got to start receiving breast milk again. He has a long way to go to being able to nurse again, but it's a start! Yesterday was a little rough... he kept having spells where he would hold his breath and his numbers would drop, but he has behaved himself so far today and seems to be holding steady with everything. His numbers look great and he is much happier! I took a picture with my phone this morning, but can't seem to load it on this blog. If you want to see it, go to my Facebook page!

Good news and bad news

Not a lot has changed with Matthew, but here are two pieces of relevant info. First of all, he does not have a spleen. Almost all of his organs have been affected in some way or another by his condition, but they just discovered yesterday that his spleen was non-existent. The spleen plays in important role in the immune system, as well as recycling old red blood cells and holding a reserve of blood. Because he does not have one, he will have to take an antibiotic every day for the rest of his life - a simple but annoying fix. So that's the bad news.

The good news is that he is totally off prostaglandin and all other medicines involved in keeping his oxygenated blood levels up! It seems his body is able to do this on it's own. His nurses are also hopeful that he will be able to go off the ventilator later today. This would be wonderful because it's very uncomfortable and they've had to tie his hands down to prevent him from pulling it out :( Poor little guy.

I sat with him for an hour and a half this morning and he blinked his eyes open every now and then, but he's pretty sedated still. Cole and Claire left last night, so for now it's just me keeping him company.

(Late) Update #4

I meant to post this last night, but things got away from me and we were pretty tired anyway. We finally got to see Matthew last night around 5:30. It was brief and we couldn't hold him of course, but it was good nonetheless. He looks pretty rough, with many IVs and tubes coming out of him, but it wasn't as bad as I had prepared myself for. The hardest part was seeing how bloated his little face was from all the extra fluid and not being able to hold him. As a mother, it's difficult to see your child looking lifeless on a hospital bed and not be able to scoop them up into your arms.

We haven't heard anything this morning, but as of last night, they were still watching him closely to make sure the oxygen levels in his blood stayed up. We have lots of questions for the doctor this morning, so I'll post what we hear from him later.