Update #3

We just met with Dr. Bradley. He said that Matthew is stable and that they will keep watching closely tonight and tomorrow to make sure he gets through the critical time. Matthew had a little problem with the oxygen levels in his blood and is on medicine right now to keep the numbers up. They think this is just a normal problem that will work itself out over the next few hours, but they will keep an eye on him in the meantime. Dr. Bradley said there weren't any surprises and he seemed pleased with the surgery.

We still haven't seen him, but are anxiously waiting!

Update #2

We just got the call that Matthew is done with surgery! They have finished putting in the shunt and his heart is pumping on it's own again! Now they are just cleaning everything up and waiting for the bleeding to stop, which is normal. He will probably go back to recovery within the hour and we will get to see him an hour after that, hopefully. Thank you for all your prayers! Now we just have to wait and see how he handles recovery.

Update #1

We were able to see Matthew for an hour today before his surgery. We just loved on him and prayed for him. He was wide awake and starving since he hadn't had anything to eat since midnight. All we know so far is that they had a slow start, due to a little trouble getting his IVs in. They are putting the grafts in now, which means they are halfway there. He is stable and things are going well. Please pray for Dr. Bradley as he works, that God would give him steady hands and clear vision.

We're here!

We got to Charleston safe and sound and are settled in at the Askins' place. Matthew looks good and is resting and awaiting surgery on Tuesday morning. We've been told that he'll go in around 8:30 and it will probably take several hours. Don't expect to hear anything before mid-afternoon, though I'll try to post as soon as I can! In the meantime, please keep both him and his doctors in your prayers. We met with Dr. Bradley this morning (he'll be performing the surgery) and he seemed optimistic about the success of the surgery.

Matthew's already had several visitors today and yesterday. My uncle Van and his family came by this morning and Scott & Sandy Bruns stopped in last night. I know Matthew doesn't realize it now, but I hope one day he'll look back and see how incredibly loved he is!

Here he is in his new home!

We got to spend an hour on the beach last night. Here's Claire and Cole enjoying the water!

All four of us!

And... here we go!

As of right now, Matthew is in a helicopter headed to MUSC in Charleston. We didn't find out until yesterday afternoon that it was happening today, so needless to say, it's gotten a little hectic around here! Cole, Claire, and I will be following him down tomorrow morning, once we've gotten things settled here. Our pastor's daughter and her family have graciously offered for us to stay with them, so we'll be camping out in Sullivan's Island, a close 15 minutes from the hospital. I'll be living down there for as long as Matthew is in the hospital, but Cole and Claire will come back and forth. My mom and mom-in-law will be helping with Claire and making sure Cole gets fed while I'm not home :).
As far as we know, Matthew's surgery is scheduled for Tuesday, but I'm not yet sure what time. Once we're settled in and know more, I'll pass along the details.

We are so thankful for the way everything has come together so quickly! Here are a few pictures of us saying goodbye to Matthew this morning. And yes, Claire did get to go in too!

Actually, here's just one picture for now. The other one's are in a format that won't load. You'll have to wait until my husband can figure it out for me! 

Hurray!

Good news! MUSC finally got back with us and they are willing to do surgery on Matthew! It's still going to be super complicated with many risks, but at least there is something they can do. The surgery that's been discussed involves connecting the blood vessels of his lungs with his aorta by way of a shunt. He'll be flown to Charleston sometime early next week and surgery will be a few days after that. We'll find out more details on Friday, but for now that's all I know. Anyway, I'll be looking for a place to stay, so if you know of something, pass it on! I can always stay in the Ronald McDonald House, but I don't do well by myself at night and it would be nice to have someone else know when I'm coming and going.

Praise God for answered prayer!

I love my children

I love Claire with all her goofiness and sweetness...

And I love Matthew even though he doesn't do anything but sleep :)

I am so thankful that God has blessed me to be a mother and I know that even in this crazy time, God knows what's best for both me and my kids. 

How we're doing

No news on Matthew yet... still waiting to hear back from MUSC. But in the meantime, I thought I'd just share with you how we're doing these days. I've had a lot of people asking about us recently, wondering how we're doing, what we need, and what they can pray for and I know from personal experience that it can be awkward to see someone who's going through a tough time and wonder what you should say or not say, so I thought I'd just be blunt so you know where we stand.

Honestly, I feel like God has wrapped a protective blanket around me this past week. I've been emotional and downcast, yes, but I've also felt this incredible peace about the future. When I've started to get weighed down or felt hopeless, God has brought to mind the fact that He cares more for Matthew than I ever can and that He loves Cole, Claire and me more than we'll ever realize. The scripture about God working everything together for good and also the one about His plans to give us a future and a hope keep coming to mind and comforting my soul.

I don't know how many of you know this, but Matthew was actually an "accident" baby. Claire was only six months old and Cole and I had no plans to get pregnant again so soon. We had been discussing seminary plans and the surprise of Matthew kind of put a wrench in those plans. Selfishly, we would rather have waited a year or so before having another baby, but God had other plans for us. I know that God does everything purposefully, but I feel like He our situation is extra-purposeful. Matthew's name means "gift from God" and we chose it because he really is a total gift, something we weren't expecting and something we have already been so blessed by. I don't know God is going to use us, but I'm finding endless comfort in knowing that God is sovereign over EVERYTHING that is happening.

That being said, we are still struggling with the gravity of our son's situation. I find myself daily pleading with God for his life, begging the Lord to work a miracle because I know that without it, Matthew won't live much longer. It's so surreal to me. When I look at him, he appears so healthy and normal. I can almost fool myself into thinking that things aren't as serious as we've been told. But then a doctor will come up and make a reference to his unusual and totally screwed-up anatomy and I'm brought back to reality. I see all the IV's and monitors on my son's body and I remember that it's about as bad as it can be. I find myself looking around the NICU and being jealous of all the other parents whose babies will probably go home soon.

And I can start to hold a pity-party for myself. I can start to feel that God's not being fair or that I don't deserve to have a child die. And I know that I could start down the road to bitterness and doubt, but thankfully, THANKFULLY, it's in those moments that God lifts me up and reminds me that I am precious in His sight and not a hair can fall from my head without His will. It's hard to express it in words, but I really do feel a peace that doesn't make sense to me and that can only come from God's hand.

So there it is. We're scared to death but we know that God is holding us up and guiding us every step of the way. The only thing we need right now is prayer. Please pray that the doctors at MUSC will come back to us with the good news that they will do surgery on Matthew's heart and lungs. And please pray that Cole and I will continue to trust God even if that is not the answer we get.

Sweet moments...

No news is.... good news??

Sorry for the silence the past few days. I kept thinking we would hear back from MUSC by now, but as of this afternoon there's been no news from them. Tomorrow maybe?

Good news is that Matthew is finally taking feedings himself. They started on Friday with just 5cc's of my breast milk and today he was up to 25! He can't always finish the bottle himself, so sometimes he still gets the milk through a tube, but hey, we'll take whatever improvement we can get! Cole got to feed him yesterday and I was able to today. He gets this confused look on his little face, wrinkles up his brow, and then acts surprised when he sucks and the milk comes out. A lot of it ends up drooling down his chin :).

Oh, we are so blessed by this little boy! Thanks for your continued prayers for him.

New Mercies

I saw my husband really cry today, in a way I haven't seen since the initial bad news back in January. We had just finished our conference with the doctors and were sitting at Matthew's bedside, taking it all in. Staring at our tiny little guy, we noticed things like how his jawline looks like Cole's and how he resembles Claire in vigorously sucking his pacifier. All of this combined with the news we had just received was overwhelming and had both of us breaking down every few minutes.

Here's the update: the MCG doctors feel uncomfortable doing any surgery and have passed along Matthew's case to MUSC in Charleston for their review. We'll find out early next week whether they have any further insight and if they are comfortable with performing surgery or not. Matthew's heart is so complicated that there's a good chance MUSC will won't have any options for us either. If this happens then the doctors here will "re-evaluate," whatever that means. Basically it isn't sounding good right now. We're slowly coming to terms the gravity of Matthew's situation, but we're also trusting that God's mercies are new every morning and that He can still do the impossible.

God is good. All the time.

Time for discussion

"The Lord is my strength and my shield, in Him my heart trusts and I am helped." Psalm 28:7 

As some of you know already, the second round of taking Matthew off his heart med (it's called prostaglandin) failed as well, so our doctors have moved on to looking into surgery options. Yesterday they did a CT Scan and were able to get a 3d image of his heart and lungs. Today they discussed their findings and tomorrow afternoon Cole and I will be meeting with them to hear their comments and suggestions. I was so hoping that we might have a chance to be "normal" and have Matthew home before this happened, but it looks like the time for serious surgical discussion has come. We would really appreciate your prayers as we meet with them tomorrow!

Little Miss Sunshine

Here's a video of Claire that Cole made this past weekend. She really is our little splash of sunshine in the midst of these uncertain and gray days. Enjoy!

Update

Sorry I'm behind in blogging. I feel like my life consists of driving back & forth to the hospital, pumping milk, and dealing with a whiny 15 month-old. I think I'm still in a daze and not sure how to get back to normal life. What is normal life even like when you have a baby in the NICU for an indefinite amount of time???

Anyway, on Friday they did a trial run of taking Matthew off his heart med (the one that keeps the arteries to the lungs open). It did not work. After about 5 hours of being off it, his vitals were going up and down and he needed oxygen to keep his numbers at acceptable levels. So they put him back on it. He's still on the lowest dose and they want to try again tomorrow, but I've lost hope that it will work. I was so hoping that he would be able to come home before any major surgeries, but it looks like we'll be talking about heart surgeries in the coming weeks.

I sat with him for about 2 hours this morning and he looked really good. I was able to hold him, change his diaper, and he even opened his eyes for me! It was a nice Mother's Day treat :) On that note: Happy Mother's to Momma, Dana, Mamie, and Granny!

I am not happy about this :(

Today at the hospital, the gastric/intestinal doctors told Cole and I that it takes about 30 days for a baby to recover from the kind of surgery that Matthew had. They have to wean him off the tube that suctions out his stomach fluids, slowly get him used to passing his own fluids and gases, then finally begin to feed him tiny amounts of milk, eventually working up to whole bottle feedings. And that's just from the perspective of his stomach problems. Who knows how long it may be when you add in his heart complications.

Oh well. I was hoping it would be sooner than that, but I guess I'll have to learn to get used to set-backs. I just so badly want him home!!!

Matthew's Video!

We welcomed Cole Matthew Nickell, Jr. into the world on April 28th, 2011 at 8:54 am. He weighed 5 lbs, 14 oz. While Matthew was born with many physical problems, his Father in Heaven is already working miracles in his life and growing our trust in Him. 

(If you have a slow internet connection or you are playing this on a pc :) and this video is skipping, then click on this link.)

Uncle Ryan's Home!

In other news in the Nickell family, Ryan got home after almost 4 months away doing top-secret stuff! We all met him at the airport last night with tears, smiles, and lots of laughs! He was very missed around here and we're glad to have him home safe!

We went from the airport to the hospital and Uncle Ryan got to meet his nephew for the first time. Matthew is still the same as yesterday, except he's moving around some. They're weaning him off the ventilator and the pain meds, so hopefully he'll be back to normal in a few days. We can't hold him while he's on the ventilator, so I'm anxious for it to come off! 

I'm recovering well at home. My mom is here for the week, and of course I've got my in-laws upstairs, so with all this help, I'm just lounging around and going back and forth from the hospital. Once again, I just want to say how much I appreciate everyone's messages, cards, emails, and help with food. I'm the worst at thank-you notes and I take forever to respond to emails and calls, but I have listened to and read every single one of them and they have encouraged me greatly. Cole and I have never felt so surrounded by love as we do now! 

Surgery went well!

His first surgery was successful! They found the blocked area in his intestines and removed it, they fixed the mal-rotation of his intestines, and they took out his appendix. Hopefully all will be well in that area now. I don't know when they'll try giving him my milk and taking him off IV nutrition, but it'll probably be awhile, until they're sure he can handle it. He's on oxygen now and heavy meds, so when we saw him, he was completely out of it and probably will be for a few days. 

I'm home now and sitting in my own bed! It feels great for us to be back to home and Claire, but it's also really hard to come back without Matthew. I mean, who goes to the hospital to have a baby and comes home without him?! Well, me. I have really been struggling with my emotions today and being back here without my baby is breaking my heart. I have all of my family surrounding me and loving me, but all I can think about is that little boy laying in a bed by himself back at the hospital. I think if God weren't holding me together, I'd probably break apart right now. 

Thank you all for how you've loved me and my family. I'm sure I don't even know all the ways you've been there for us, but thank you. 

Matthew's first surgery

Today Matthew is having his first surgery. It came as a surprise to us, but it seems that his stomach/intestinal problems have come to a head and need to be addressed. He has a blockage somewhere in his intestines, as well as a problem in his stomach. Our doctor wasn't sure what they might find, so we're not even sure what kind of surgery they will be doing. About an hour ago, he was taken back and we haven't heard anything since. We'll be getting updates, but I can't promise that I'll be prompt enough to post them :)

Some good news we received today is that they lowered the dose of the main heart med (the one I talked about in the post below) and he seems to be responding well. We are very excited about this! I'm sure the doctors will give us more info on what this means later, but today their main concern was with his bowels and they just mentioned this part. But still, praise the Lord!

Also, we were able to spend yesterday and much of today holding Matthew and just loving on him. I can't express the joy it is to hold him and be able to kiss him as much as I want! I'm praying that the Lord has many more of these times in store for us.

Isaiah 43:1 "But now thus says the Lord, he who created you, O Jacob, he who formed you, O Israel; 'Fear not, for I have redeemed you; I have called you by name, you are mine.'"