A viewing will begin at 9am on Wednesday at Grandview Funeral Home. Graveside services and a memorial to follow.

Our beautiful boy Marcus went home to Jesus, Sunday December 26, 2010 at 4:40pm. He fought long and hard to stay with us, and we are so blessed to have had 7 weeks to cherish him. Funeral arrangements will be posted once they have been made.

Things have been crazy busy around here so I will try to recap as much as possible. First, we had the privilege of watching our oldest daughter preform in her very first orchestra concert. I am so proud of her, she amazes me everyday with how much she is growing and changing right before my very eyes.

I also finally finished these beauties....

now that's a full mantle.

We were also able to finally bring home the youngest Costner, Myles

that's him, strapped in and ready to go home for the first time.

It has been quite an adjustment, having him home, one that we have been grateful to make. He has been a great baby, sleeping,eating, waking right on schedule. As long as we have his bottle ready every 3 hours he is a happy camper, take a little too long and he lets you know quickly that he will not tolerate that kind of behavior. Lucas has been very interested in him, though, I think he sees him more as a wrestling partner than anything so we are keeping a close eye on him.

Here is Marcus before his surgery on Tuesday, looking like a sweet little elf in his Santa hat. He went in at 7am for a repeat of the eye surgery and his G-tube placement, by 11am they were done and we walked him back to his bed space. Both of the surgeries went well, he is still intubated as of now, they did remove the breathing tube on Thursday morning, however he didn't tolerate it very well, so he was reintubated. We are going to try again Sunday.

Here is our little elf after surgery.

If you have made it this far I just want to say Merry Christmas from our family to yours.

Do you ever feel like life is stuck on fast forward, and if you could only find the pause feature you could actually get a moment to catch your breath? Please if you find it, let me know.
I have put off updating after our meeting Friday because it wasn't exactly the news we were hoping to hear. When asked how the boys are doing, more often than not I find myself saying they are fine or good, and then I tell a few good updates, mostly about Myles. It just seems easier to tell the good parts rather than get into all the ugly details, and sad news that we get. Honestly, I don't have the option of falling apart, so putting on a brave face is what I do. However, at the meeting, we got the impression that the doctors don't believe Marcus will make it home, and that if he does, it will be so we can spend as much time with him as a family as we are able to. Saying that is difficult, actually processing it, is impossible. This is not the first time Marcus has been underestimated, and I have faith that it won't be the last. Marcus has shown us that he is a fighter, and he is not going to just give up. Thankfully, he has inherited his dad's fierce determination.

Marcus got a big boy bed and a mobile on Thursday.

and here is our big boy relaxing while he eats, I had moved his hand, and he promptly moved it right back to where he had it in the first place, as if to say stop it mom, I want it this way.
We have decided that Myles is waiting around for Marcus, he seems to refuse to come home. He will go a couple of days with no apnea episodes(which he has to have 7 consecutive days to be released) and then he will do it again, which of course starts the clock all over. That is absolutely the only thing keeping him in the hospital.

of course, once I woke him up I had to pull a paparazzi moment. this is proof that he does actually open his eyes from time to time, and though you can't really tell in this picture, his eyes are bright blue. I am hoping they stay that way.

A little half smile and he is back to sleep. Let's keep our fingers crossed that he sleeps so well once he comes home.

We have a meeting set up with Marcus' doctors for Friday to discuss long term care plans, hopefully we can get an idea of what exactly is going on with him, and when we can expect him home. I honestly feel like I don't know anymore than I did when we first discovered something was wrong. He has test after test done and yet, there are still no answers. Can you tell I am frustrated?
Myles will also have a test in the morning to see if he is somehow aspirating his food, which may be causing his apnea episodes. We were also informed today that after doing an ultrasound on his head they found a tiny cyst, which is likely a level 1 brain bleed resolving itself. They believe that right after birth he had a tiny(pin point size) brain hemorrhage and that resulted in the cyst. His doctor said it was nothing to worry about now, she just wanted to let us know.
It is through God's grace alone that we live to see another day, and His grace is sufficient. Through all of our frustrations, hurts, and questions, we are not alone. Marcus is not alone. God is with us always, and that is what keeps me going.

Today we did this.....

After many nodonttouchthat's, we decided a change of activities was in order....

because nothing says I love you mom like making sweet sweet music with the pots and pans. The added coolness of having a clubhouse in the cabinet is simply a bonus. And because we love our pots and pans so much.......

this is what I find when I go to put Lucas in the tub. Honestly, the fun never stops around this place.

Today was more of the same. Myles is great, still having the breathing episodes while he eats, but other than that everything is looking good. No word yet on when we can expect him home, though, they can't keep him forever right?
Marcus seemed a little more agitated than normal tonight. That has me worried, since last Sunday, any little change in him tends to send me into panic mode. Though, according to his stats everything is the same as it was before, so I am probably just being a paranoid mom.
This whole experience is starting to wear me out and I am beyond ready for my boys to come home to us. I never imagined that they would spend the first month of their lives in the hospital, and that we would be without them for so long.
On a lighter note, our church Christmas play ran this weekend and it was spectacular. Everyone put so much into it and it really showed. Half of the proceeds are being donated to the Dandy Walker Foundation in honor of Marcus, and I can't even begin to explain how grateful Steven and I are for that. We are truly blessed to be a part of such a wonderful family. Thank you MeadowCrest.

Today I was able to finally hold Marcus again. We haven't been able to hold him since Saturday because he was so sick, so almost a week without holding my little guy was killing me. Sitting in the chair, holding him, I just felt relief, relief that I was holding my boy, who has once again defied the odds. This tiny baby who has been through so much already, yet keeps on surprising us all. He actually snuggled up to me and went right to sleep, which is unusual since holding him more often than not makes him uncomfortable. He usually whines and squirms, and it stresses him out. Not today, today, we sat in that chair for an hour and a half, he slept, I even dozed a bit, and it was one of the greatest moments I have ever had. I can tell he feels better, there is such a difference in him.

He was wide awake when I arrived. The blue thing on his eye is where his stitch is to close that eye. It is still a bit swollen, but already looks better than yesterday.

Squinting at the flash. Big accomplishment for someone who is not supposed to be able to see, you can also see the stitch a bit better in this shot.

Myles will not be coming home tomorrow as planned. His doctor wants to keep him a little longer, because he has not learned how to pace himself when he is eating and tends to get choked up. This is a new doctor, so I give it a few days until he learns that this is just how the Costner men eat and Myles is actually just a victim of genetics. He can't help himself. However, better safe than sorry, and as much as I want him home, I know it is going to be a bittersweet day, bringing home only one of my boys.

I apologize in advance if this turns out to be a rambling post. Lucas decided that 4am was a good time to wake up this morning so I have already had a few cups of joe. My brain is on fast forward right now. Lucas however has hit the snooze button already....

nice huh? I wanted to update, since there has been so much up and down these past few days. Thanks to so many prayers and God's grace and mercy, our little Marcus is making progress. Sunday and Monday were sort of touch and go with him, and Steven and I had to make the hardest decision we have ever faced. I am so thankful that God has given me Steven to go through life with, he is truly my other half, and to see his faith is inspiring to me. He never wavers, simply keeps repeating " All I need is a mustard seed." I thank God, for my wonderful husband. Back to Marcus, he received a blood transfusion on Monday, and although they won't confirm until 72 hours after, I believe it has done a good job. He is looking much better, and they are hoping to try him off the CPAP today. He is also scheduled for his eye surgery today, so please say a little prayer for that to go well. Our little super hero is a fighter, and even through his struggles he is fighting to stay here with us. The breathing machine talk has subsided, and we are now watching him slowly progress. Apparently his little body doesn't do a very good job of releasing the carbon dioxide and so with that building up over time, he started compensating in other areas, and it just got to be too much for him. The good Lord was with him, and us, through it all, and he is getting better.

My sweet boy on Monday.
We were also informed yesterday that Myles with be coming home on Friday! This Friday. As in two-days-away-and-nothing-is-ready Friday. Yikes. Ok well, really, I just need to wheel the bassinet into our room, and set up the changing table for in there, oh and get down all the little bottles and sterilize them. So that is the plan today, get ready to have a newborn back in the house. It's almost surreal, he is actually coming home. One down, one to go. Let's have a little looksie at Mr. Myles shall we....

Take a good look and notice that he is 100% tube free. That's right folks, the youngest Costner male has officially joined ranks with the oldest two, and is eating like a champ on his own. Making Daddy proud :)
I thank you in advance for all the prayers I know are going up for my boys, and our family in general. God is great, and we see His greatness and glory everyday.

                        

I haven't updated in a few days, things have been a little crazier than normal with Thanksgiving. I am almost ready for things to be normal around here, whatever normal is anyway.
Marcus has been up and down in his progress for the last few days starting with an infection in his eye. He has nerve damage so his left eye doesn't close making him prone to eye infections apparently. Then his left lung collapsed, due to the fact that he is always laying on his left side, so of course he was requiring more oxygen for that. He was scheduled for surgery on Monday, to close his eye a little more, however all that came to a screeching halt today. He has gotten very sick, we are not sure if it is due to an infection or the damage his brain has sustained from the hydrocephalus. He is no longer able to breathe on his own, as of now he is only on hte CPAP, but if he gets any worse they will have to intubate him. We have found out the hard way that things can go from bad to worse with no warning at all so we are on pins and needles right now. We will not get the results back from the cultures until Tuesday and that seems so far away right now.

I didn't make it to the hospital today, bringing the three oldest by myself is just not a task I felt up to today. Luckily, Steven gets off early all this week so I will be able to go tomorrow by myself and spend some quality time with the boys without distractions. I do love those times, when I can just sit and hold them, and look at them, quietly, concentrating only on them. I so wish they were home with us. I keep telling myself they will be soon.
Myles finished another bottle today! Yay Myles! If he keeps this up he will catch up to his big brother Lucas in no time. He is still doing great, just needs to take all his feeds from the bottle and he will be coming home. Oh happy day.
Marcus, my sweet little super hero is still fighting the good fight. I think it might be easier for me to list his updates~
  Hydrocephalus-the shut is keeping the fluid from building anymore, but it seems like we have hit a plateau on the actual drainage. His head measurements seem to fluctuate from day to day within a centimeter or two.
 Possible cleft palate- they mention this, but don't seem to be too worried about it for the moment.
 Sucking reflex- he is not showing any signs of having a sucking reflex, so they are just continuing the NG feeds, if and when he does show that he has developed the reflex, they will begin bottle feeding. However the dr has told us of the possibility that he will need a g tube inserted, if he does not.
 Lungs- he has been placed on diuretics to help with the fluid on his lungs. hopefully this will work and he can be taken off the oxygen.
 Hemi-vertebrae- no change/not an issue right now.
 Fused ribs- again, no change, not an issue right now.
 Hearing- he failed the hearing test again.
 Eyes- due to his inability to blink his left eye, he now has to have his eyes taped shut every night.
The girls are out of school this week for Thanksgiving break, which means a whole lot of bickering sisterly love is going on in the house(and the van, and the store, and the yard...) Thankfully Monday is almost over.  

Going to the hospital with 3 kids is a test of wills, theirs, and ours. So far Lucas is winning. Today, Chloe and Trinity had him in hte reading area trying to entertain him while we sat with the boys, and he squealed loudly, as he so often does, Steven and I looked at each other and he said, "Man, who does that kid belong to?" Apparently, he belongs to me, the girl who always said MY kids will never act like that. MY kids will know how to behave properly in a public place....now I know better, because I am THAT mom, the one that gives her kid the extra cookie because it keeps him quiet for just 2 more minutes. The mom that thinks that the creator of Mickey Mouse Clubhouse is a genius, and the mom that knows, it goes by all to fast. So I clean up the crumbs from that extra cookie, and I jump around like a maniac to the Mickey theme song, and when my kid squeals in a public place, I just pretend I don't know who he belongs to.

                                                    Marcus and Myles dressed the same.

                                        Even the tiniest newborn socks are too big for Marcus.

Today Marcus had a hearing test done, he didn't pass, so they will do a more sensitive test soon. The physical therapist met with us today as well, she will start working with Marcus on Monday. He was also started on a diuretic to help with the fluid still in his lungs, which hopefully will mean he can be taken back off the oxygen soon. The nurses are trying to wean him out of his isolette, however he gets stressed out so easily, and with so many other things to work on his little body just is not ready to handle the stress of regulating temperature. His doctor mentioned he may need a g-tube, which is a feeding tube inserted into his abdomen, later on, but told me not to worry about it now, he would wait until Marcus was closer to 40 weeks to make that call.

Myles is still going strong. He is taking a bottle feed a day, he usually takes about 5-10ccs at a time, then gets tired and falls back asleep. This kid is always sleeping, Steven keeps saying he is resting for when he comes home. I think that is a good idea, because with all the noise around here, there is no rest. Today he was entertaining me with his face making abilities while I was trying to feed him.