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.'"