Miracle Request

Just another small update on Matthew's progress. Last night the doctors came back to us with an option we might have before we consider surgery. They think there might be a chance that the two arteries coming from his lungs are mature enough to grow on their own without drugs for a few months, which would give us a few months to go home and enjoy time together before he needed his first surgery. Up until now, they thought those arteries were fetal ducts that would shrink up and stop working without the help of the drugs he's on. So their plan is to take him off the drugs and monitor his status. If his levels stay the same, then hooray! If they drop, then he will immediately have to go back on the drugs to prevent almost certain death.

Please pray that this will work! It would be a miracle if it did, but we know that we serve a God of miracles and we're hoping that he chooses to bless us with one!

Update of the day

The good news is that the heart catheterization went well and showed the doctors a lot more of Matthew's heart structure. They found that he has two arteries going to the lungs, so each lung has it's own supply. The bad news is that these arteries don't connect as they should and an operation will have to be done to connect them with shunts. Because Matthew only has one pumping chamber in his heart, the blood to the lungs has to be re-routed to come from another source. If his heart were to try and pump to both the body and lungs, it would eventually fail from the over-exertion. Anyway, the procedures are risky because of the teeny tiny size of Matthew's heart and arteries. They have to be very exact with the size shunt they choose, because too much blood flowing through it could cause the lungs to flood, but too little could cause clotting and blockage. We'll know later tonight if the surgeons here feel confident to perform the surgery and if they do, then it will happen in the next week. If they feel too uncomfortable with the risks, then we will be referred to another hospital.

Obviously we're still struggling to understand what all this means, but we feel like we've been given some hope and we would appreciate your prayers, especially for Matthew as he has to go through all this probing and uncomfortableness. It's hard to see him with tubes and IV's all over his little body when all we really want to do is hold him close!

Here are some pics from the day. Thanks for the continued support!

Some visitors Matthew had today

Welcome Matthew!!

First of all, thank you for all your prayers. We couldn't make it through this without all of you, and we mean that!

Okay, now for the story, narrated by me and illustrated by Cole. 

Wake up time!!! We were the first case of the day. The tornadoes tried to hold us back, but all the docs and nurses were still able to get to the hospital :)

Here's me at 5am getting ready to leave for the hospital! I had just taken my second anti-bacterial shower :) and thought we should get a last minute shot of my belly. 

Matthew was born at 8:54 am, weighing 5 lbs 14 oz, and 19 inches long. He has Cole's nose and a full head of hair! He was breathing of his own - Praise the Lord! 

 I got to see him for about .5 seconds and they whisked him away to the NICU to get started on tests to determine his exact condition. 

We were strong for most of it, but sometimes you've just got to cry :) It was hard watching them take him away, though Cole did get to follow him to the NICU.  Cole held my trembling hand through the c-section and often peeked over the curtain and into my insides :) The doctors and nurses definitely made fun of him for his monster camera.

My parents, Cole's parents, Julia and Claire were all there waiting to see Matthew as they took him down to the NICU. I think everyone was excited and emotional and just wanted to see him longer!

After they were done with the preliminary tests and evaluations, we got to spend a good amount of time with him. Cole and I even got to hold him for about an hour! At one point, I looked over to hear Cole whispering the Gospel into his ear :)... one of those things you don't ever forget.

We begged and pleaded and finally they let Claire come back and meet her little brother. She was actually kind of fascinated with him and kept trying to touch his head :) So thankful for this moment as a family! 

Cole holding his precious little hand!

 We are scared to death, but so in love with our little son! 

Here he is - Cole Matthew Nickell, Jr.

As of now, he's breathing on his own, though the doctors don't know how. Tomorrow morning they will perform an invasive test called a heart catheterization, to see how the blood is being routed to his lungs. Depending on the outcome of that procedure, we will then have several surgical options. So far, they've confirmed that his heart has as many complex problems as they feared, and we're just looking for options. I'm doing well and should be recovered in a few days. Cole wanted me to tell you all that he's already up and walking and doing fine :) The c-section wasn't as horrible as I remembered, though I still really dislike the fact that I was cut into. Cole and I are still dealing with the rollar-coaster of our emotions and we know that we have difficult days ahead, so we would appreciate your continued prayers. We can't tell you how much the texts, phone calls, and messages have meant to us. We feel your love and are so grateful! 

Trusting Jesus

A devotional I read recently from Jesus Calling:

"I am taking care of you. Trust me at all times. Trust me in all circumstances. Trust me with all your heart. When you are weary and everything seems to be going wrong, you can still utter these four words: 'I trust you Jesus.' By doing so, you release matters into my control, and you fall back into the security of my everlasting arms."

It sure is easy to read those words and think that I am good at trusting Jesus, but when the rubber meets the road, I have to admit that I am a control freak and I really do think that I could do a better job at planning my life than God can. Do I really trust that he is taking care of me at all times and in all circumstances??? I like to think so, and I guess the next fews days and weeks will tell...

Nesting - finally!

Last night some dear friends from my bible study got together for dinner and surprised me with baby gifts for Matthew! It was mostly clothes, with some toys and blankets too, but it really meant a lot to me. Up to this point I have avoided shopping for baby clothes and politely declined every offer for a baby shower simply because I've been so afraid that I'll never get to use the things I get. But I think that attitude tends to be a little morbid and thanks to my friends last night, I've decided to stop having that attitude. I'm going to look forward to Matthew coming home and believe that it's possible! I'm not going to be unrealistic, but I'm going to get excited have an appropriate hope!

So, today I got out all the baby clothes and blankets I've received so far, took the tags off, and am washing them and packing them for the hospital. My sister-in-law let me borrow a bunch of newborn clothes, so he'll actually have a pretty good wardrobe. I'm also thinking of setting up his crib and making a little space for him in Claire's room. Woohoo! I'm finally doing a bit of nesting like any other normal mother :) It's improved my mood greatly and gotten me really excited for next week.

So thank you to my friends (especially Sarah!) for loving me and knowing what I needed :)

Messing around

I love it that Claire is learning to play by herself. For the past several days, she's gone into her room, gotten real quiet, and then I hear her talking to herself. So I peak around the corner, and here she is - hanging out in her toy bin :) Notice her beads... she's quite attached to them! 

Cheering my soul

Today has been a hard day. As Matthew's birth gets closer and closer, this sense of impending doom seems to grow in my mind. I find myself scared to look past his actual birth and into the weeks and months to follow. As I've written before, holding reality in one hand and hope in another is hard for me. I'm young, but I feel like I've already experienced a lot of death in my life already and while I've seen God's faithfulness time and time again, I feel like I've seen it more in the comfort of His presence after loss, rather than in the sparing of that loss. Does that make sense? It's like I fully expect God to call Matthew home to Him, while getting us through it with His love and grace. In fact, I've been crying all night because of this. I know God will be faithful to get us through the storm, but I'm so scared by the fact that I can't control it.

But, and this is a big BUT, I've been reading over these verses that some wonderful women from my old church have been sending me, and I'm finding great comfort for my soul. My favorite right now is Psalm 94: 18-19 -

" When I thought, “My foot slips,”your steadfast love, O Lord, held me up. 

When the cares of my heart are many, your consolations cheer my soul."

God is being so faithful to hold us up right now and even in the midst of my fears, I find peace in giving up my fears to Him. He knows what will happen in two weeks and He is preparing us for it. I don't know why He's chosen to give us this trial, but I've seen Him give grace to others before me and I trust that He will lavish it on us when the time comes. 

A day in the life of a little girl...

This is Claire. She is a fun little girl. She has this amazing curiosity and energy (gets it from her father) that keeps me on my toes. She wakes up every morning caterwauling until I get her out of bed. When I finally peek my head in her room, she goes crazy bouncing up and down and running laps around the crib until I scoop her up. We eat breakfast, then she goes searching for something to get into! Look at those mischievous little eyes...

When she finds something to explore, she gets extremely happy! (Notice how she's wearing my headband upside down. She likes to go into our bathroom and pull out all my brushes, hair things, and other *feminine items* and scatter them through the house.) She always wants to show me what she's found, but when I get close enough to take it away, she starts running away. Smart little monkey...

She doesn't like to be kept out of the action. She wants to be wherever you are. (In this case daddy is in the bathroom trying to get some privacy from this curious little girl.)

She's very persistent, knocking on the door and yelling "Da daaaaaaa!"

Finally she notices that I'm behind her taking pictures and decides that playing with me will have to do until daddy comes out :) Playing generally consists of me sitting on the floor and her climbing in and out of my lap and bringing me all her toys and books. 

One of Claire favorite things to do is play in the water. Whether that's hanging out in the shower with daddy or splashing in the sink, or playing in the pool, she is definitely a water baby! Cole usually showers her several times a week and it is the cutest thing to watch. She gets all excited and cuddly and doesn't want to get out. When I peek around the shower curtain to take her out, she clings to him like this...

We've already gotten her in the pool once this year. Aunt Jooj is housesitting for a friend with a pool, so we took Claire over there yesterday to play. It was freezing, but she loved it! 

Aunt Jooj even dunked her! She was shocked by the cold, but didn't fuss. 

All smiles! 

And that is what life for little Claire is like. Mostly fun, some bumps and bruises, but always filled with joy. We really like this little girl and figure we'll keep her around for a long time to come... 

:)

Our little family

With only weeks until Matthew arrives, we decided to take some last pics of the three of us.

Due Date!

Right now it's 4:13 am and I am sitting here munching on cherios and blogging because I can't sleep. I woke up around 2 and after tossing and turning from side to side and listening to my husband snore and hearing my stomach growl and getting frustrated because I was having acid reflux, I finally gave up and got up. Now I feel much better, though I know I'll probably drag through tomorrow.

The good news is that at least I see the light at the end of the tunnel. A light that is fast approaching, I might add. At my OB appt yesterday I was scheduled for a c-section on April 28! I'm half excited and half apprehensive. Excited because that means only 3 more weeks of pregnancy and then I get to arrive at the hospital and poof! he'll be here! No exhausting laboring, no worries about something going wrong, and I can tell my family exactly when to arrive. Not bad for someone like me who loves to have a plan. On the other hand, having a second c-section almost completely knocks out my chances of ever having a normal birth experience, something I so badly want to do! And I know how difficult is it recovering from a cesarian. I have a horror of being cut on and this time I get to look forward to it for 3 weeks. Not fun at all!

Also, in case you were wondering, we've decided to stay at MCG for now. We've met all the surgeons and doctors that will be caring for us and we feel confident that this is the best place for now. Once Matthew's born and they have a better idea of how complex his situation is, they will help us evaluate again and see where the best possible place for care is.

So yeah, mixed feelings. But I know that God holds all of these details in his hand and I need to relax and trust that he is leading us. Every once in a while, when a doctor is explaining just how messed up Matthew's heart is, I'm tempted to throw up my hands and give in to despair. I think I'm more of a pessimist by nature and it's been hard for me to let myself hope. When I think of our little boy's future, I see a big blank and that scares me to death. Holding reality in one hand and hope in another is SUCH a difficult balance! As a Christian, I know that I serve a God of miracles who can fix this with one word, but as a worried and sinful mother, I just can't see how this story ends well.

All that to say, we would appreciate your prayers in the weeks to come! I am SO thankful for the body of Christ and your encouragement has really helped.