Some Major Milestones

It's been super busy the last few weeks. I've been spending 8-10 hours at the hospital everyday to work on feedings with Andrew. A lot of people ask if I get board spending so much time there...actually it goes by really fast for me. I pretty much do most everything for him, which I love. I could hold that little guy and look at him all day. I think I'm just making up for lost time since we had to wait 7 weeks to hold him in the first place. So Andrew is getting lots of mommy time and we both are loving every minute of it.

We've celebrated a lot of milestones this last week or so. Last Saturday, Andrew hit his 3 month birthday...really we've been doing the NICU thing for three months? Crazy? He now weighs 6lbs and 4 oz. and my little boy is getting so big!  My due date was last Monday. That was a hard milestone day for me....a lot of emotions. I just keep remembering the nurse say to me right after I delivered to expect these boys to be in the NICU at least until June 27th. This seemed so far away at the time.
Well, here we are.
Who knew we'd be where we are at...

We've also hit 100 days in the hospital. That blew me away when I heard them mention that in rounds with his team of doctors/nurses this morning. I had kind of lost track of the number of days.
100 days is a very long time.
I feel like my life has been put on hold for those 100 days and the numerous trips to the hospital each day just blend together. Since we spend so much time there, we've gotten to know quite a few nurses and doctors. They are amazing and we've grown to love a number of them. They truly have become  part of our family.

Stephen's started his job this week...another milestone we've been looking forward to since December and he is getting used to now going to work each day. He's just gotten into it all and the first few days have been lots of training and orientation. So nothing too hard yet. It's been a very long two weeks since he's been gone and I'm glad he's coming to visit for the 4th of July weekend. It will be so good to have him here even if it's just for a few days.

We've been able to talk to Stephen through the wonders of technology. Skype is seriously the best thing they ever invented. We take a computer to the hospital and chat every few days now that he has the internet set up at our new house and I even got a virtual tour of our place, since neither of us saw it before we signed the rental contract. It will be great! It's in a nice neighborhood and is just what we were looking for. I'm very excited.

Saying Hello to Daddy

Andrew continues to amaze us all. In fact we're working on coming home!  He passed his eye exam...which means his eyes are fully developed. Another huge milestone!!! This is the only thing we've been waiting for.  His eye doctor okay-ed him to come home on oxygen.  Wahoooo! So we'll have him on oxygen and he'll also have a feeding tube, for when he can't quite eat the entire feeding orally. They typically don't do this, but I'm at the point where I'll do pretty much anything and everything to get him home. We're very excited and surprised it's coming so soon we definitely didn't expect it quite yet. Andrew has had a few visitors who came to see him and hold him for the first time this week. We of course had to document the occasion. So here's a few pictures to enjoy!!!

I just can't get enough of those darling little hands

Grandpa Jerry was able to hold our sleepy boy!

Aunt Allison visited one afternoon and snuggled with our little guy!

Aunt Camille had a turn as well to visit little Andrew

Comings & Goings and Everything In between

Alright...I know this is a long over due post. Life is moving forward and we're trying to keep up. I know we keep saying this, but we truly appreciate all the love and support we've felt especially the last few weeks. It's been two weeks since we lost our Ethan and our hearts are still aching, but it was so wonderful to see so many friends and family, some who traveled long distances to be with us, at the funeral. We are humbled by the support we've felt. I don't think we can adequately express how much this meant to us. So I'll simply say...Thank You!
 At times it is very difficult to go back into the same hospital where we've gone everyday the past 3 months and realize that Ethan is no longer there. The past few weeks, Stephen and I have also had to learn how to share. We both want to do everything for Andrew. We're used to doing their cares at the same time and each taking one of the boys.  It's funny to realize that now we're having to learn to take turns.
Many people have asked us... "How are you doing?" Well, this questions has been undoubtedly difficult to truthfully answer ever since the boys were born. Most days, I'm doing great. I really am. I have gained a greater testimony of how the spirit is a comforter to us, especially during such difficult trials. This is really what has sustained me the past two weeks. We've had some really sweet and sacred moments, where little things seem to reassure me that Ethan is near and we are loved. I have needed those and am very grateful for them. As much as I hurt and long for Ethan,  I would say that my love for Andrew has grown even sweeter. I'll be honest though, I do have my moments and I do break down. But I am grateful for the times in between.

Just a quick update on our little Andrew.  He has really made some amazing improvements and I just know his brother is by his side helping him.  His surgery for the shunt went really well and so far everything is looking great. It's releasing the pressure and doing what it needs to. Yea!!! This is everything we could have hoped for and you can tell that he's feeling so much better. With that said, Stephen and I are both a bit nervous and continue to pray that there are no more infections.

Here's Andrew right after his surgery...He's not quite sure about everything

 So now really the only thing that Andrew is working on, is his feedings. He's been able to take from a bottle now for about 2 weeks.  At first he took one bottle every 12 hours, but a few days ago they decided to have him try a bottle every 3 hours, if he's awake and alert. So he's been getting to try oral feedings from a bottle about 5-6 times a day. He's definitely a preemie and it really takes everything out of him to coordinate the sucking, swallowing and breathing. He averages on taking about half his feeds from a bottle and when he's done...he shuts down closes his eyes and crashes. I was trying to post a video of Stephen feeding him a bottle, but I'm just not that computer savvy...especially with Stephen gone. I'll keep trying and If I can figure it out, I'll post it later.

With all that eating, Andrew's really starting to gain some weight and is now at 5lb 9oz. He's also starting to show us he can smile. They are the "asleep, gas bubbles in the tummy" smiles...but I tend to think that he's dreaming of Ethan, which brings a smile to his face and to mine. :)  He had a lot of visitors who came to see him while they were here in Utah for Ethan's funeral. We loved sharing him with his Uncles and Grandparents!

Grandma Holden Getting a Turn To Give Luvs

Uncle Matt got a chance to hold him too!

If we haven't had enough craziness in our lives...this week we packed up a big moving truck with all of our things and Stephen has spent the last 2 days driving it across the country to our new home in Illinois. I certainly am not ready to have him leave....but I don't think I'd ever be at that point.  He starts his new job in a week and will hopefully be able to do some unpacking and get settled a bit before all of that begins. I wish I could be there with him. Hopefully we can be together as a family soon.But until then...

Happy Father's Day Daddy!

From a very sleepy boy!!!

Quick Update on Andrew

We've had a busy week. Which I guess is a good thing, 'cause it keeps our minds off last weekend. We've received an amazing outpouring of love and support, and I want to thank everyone for their kind letters and comments. They help bring a little light during a dark time.

So Andrew had surgery yesterday to place a shunt. Everything went very well, and we are not expecting any complications. They will take some x-rays today to make sure everything is placed where they want it, and we are hopeful that Andrew will start to feel more comfortable in the next few days. I admit, that I am optimistic that this will resolve his hydrocephalus, that it won't get infected, and that he will be off oxygen soon, no more desats and bradys, and will be home in a month. Possible, yes, but unrealistically optimistic. But a dad's gotta dream, right? :)

The shunt has a little reservoir on the top of his head, which flows to a valve behind his left ear. The valve is a pressure release, so when the CSF reaches a certain pressure, the valve opens, and the CSF drains through a tube down to his abdominal cavity where his stomach, liver, kidneys and intestines -- I didn't realize there was extra space down there. Then the CSF is absorbed naturally into his body.

So, as long as this shunt works, we'll just be waiting on him to start breathing without supplemental oxygen, stabilizing his vitals, eating from a bottle (he has demonstrated an ability to suck, swallow, and breathe, and pace himself, which is AWESOME -- there is a very strong possibility that he won't need a g-tube!), and finishing up his eye development. It is awesome to be working on the things which will allow him to go home -- to us.

Ethan's Obituary: http://andersonmortuary.com/node/552

An Angel in Heaven

Our sweet Ethan Gerald Holden was called home into the arms of our loving Savior on June 4th, 2011. Our little warrior fought a valiant battle for his life since the day he was born.

Our little son has had a huge impact on many people in his short 10 weeks of life. Ethan was born to proud parents, Stephen and Emily on March 25^th, 2011, at 2lb 1oz in American Fork.  He came into our lives and received his body to fulfill his short mission here on earth. The giant spirit that filled his little body has taught us much about patience, faith and charity.  He brought many smiles as he showed us that he is the boss. He loved to kick, wiggle and play havoc with his nurses, whom he certainly kept on their toes! His big eyes melted the hearts of his parents—he knew their voices and turned to them for comfort.

Ethan is survived by his father and mother, Stephen and Emily Holden and his twin brother Andrew of Pleasant Grove, UT; grandparents, Gerald & Carolyn Dent, Fruit Heights, UT and Bruce & Kathy Holden, Midland, MI, as well as many aunts, uncles and cousins who love him dearly.

Our most sincere thanks to the doctors, nurses and staff at Primary Children’s Neonatal Intensive Care Unit for providing the very best care, and for loving our little boy as much as we did.

Funeral services will be held to honor Ethan’s life on Saturday, June 11^th at 1:00pm at the Pleasant Grove West Stake Center, 56 S. 1300 W. in Pleasant Grove, Utah. Ethan will be laid to rest following his funeral next to his uncle baby Jarron, in the Alpine City Cemetery.

We are so proud of our son. Ethan has taught us more than we would have been able to teach him. Our hearts are aching for the day when we can be together as a family again. He was a blessing in our lives and we miss him so much already. We love you little one.

Our Angel Ethan

Ethan Gerald Holden

Born: 3/25/2011, 8:23 am, 2 lb 1 oz
Passed: 6/4/2011, 3:30 am, 4 lb 15 oz

He has already taught us so much, and will continue to teach us for a very long time. Nothing acute or immediate happened, and he didn't have any additional set backs, but he just got more and more sleepy over the past week and a half. Emily and I both were able to hold him on Thursday night and he was still breathing on his own and doing pretty well. Friday morning he let us know that he was ready to go home. Primary Children's was incredibly sensitive to our situation, and gave us a large private room to have Ethan stay in so many of his cousins and family could come say hello and also goodbye. We had a wonderful visit with our Utah family, and then Emily and I had a long time in private to hold him and cuddle him. He was very comfortable, and did not have any trauma or pain during his passing, and he gave us plenty of time to help us through his transition. We had many tender mercies during such an excruciatingly painful time.

We want anyone and everyone to participate in a brief memorial service with us on Saturday June 11 in Pleasant Grove. It will probably be 1:00p or 2:00p, either in an LDS Chapel, or the mortuary. Any of you who have been reading and following our story with Andrew and Ethan are most welcome to join us, and I hope to see you. We'd like to share with you a couple of the special experiences we've shared with Ethan. He is a wonderful son.

I will post the time and location on this blog when we know specifics. We thank you for your love.