NICU can be fun!

It was Cole's turn today to play on the swing ~ the nurses hooked him up today with the swing as a special treat to make him feel better. Thanks for sharing Jack!



And he looks pretty content...

We're back on the upswing...

We're headed back in the right direction I think. Cole looked and acted a little more like himself today but he's not quite back to normal yet. He's getting more feisty again, which is a great sign. He's acting hungry now and taking all of his bottles again.

His nurse yesterday switched him to a special bottle (it's called a Haberman bottle). This bottle is actually much easier for him since it allows us to regulate the flow so he doesn't get flooded with milk. He has had a tough time using a regular bottle because it flows too fast for him so this has enabled him to eat much easier, without exerting so much energy trying to keep from drowning in milk.

His oxygen is weaning back down now and his antibiotics are in full force. He's redder than red from his blood transfusion but hopefully his color will even out again soon. He gives a new meaning to getting "red in the face". His whole body is beet red!

Hopefully by the end of the weekend, he'll have the infection kicked, his oxygen off and his eating perfected. Then we just work toward homecoming again. He's a fighter and he'll never give up! Thanks for your continued prayers, wonderful notes and well wishes. Hope everyone has a great weekend!

Quick Update...

It's been another tough day for Baby Cole. He was not interested in eating too much today so most of his feeds were done by gavage (tube). This is OK for now - he's still getting the calories etc. it's just that he didn't take it by bottle. Temporary condition.

Secondly, his blood culture came back positive which means that he has another blood infection. He had this a long time ago and it was successfully taken care of by antibiotics. They have started IV antibiotics again and surely it will cure the infection. Even though he received a blood transfusion yesterday, they still need to treat the infection aggressively so it doesn't knock him down too much. He also has a bacteria growing in his nose which is being treated by nebulizer/inhaler. This should resolve quickly as well.

He is still very out of sorts and not himself. But we're hoping that by tomorrow he'll start feeling better. The oxygen is still on for now - which just makes it easier for him to rest so he can regain his strength. His eyes are still very swollen today from his eye exam late yesterday - which just makes him look a bit worse than he really is.

It's so hard to see him down and out like this - I just need to keep the faith that he'll pull out of this soon and we won't be too far behind on our milestone homecoming date of Thanksgiving. None of his issues are life threatening right now so I feel thankful that everything is fixable. God willing, we'll all be home together by Turkey Day.

Going to make bottles, get JD's jammies on and hit the sack. Been a long emotional day and we need to be strong for tomorrow! G'Night all.

Update on the Car Seat Video

Another friend just sent this to me after reading my blog entry today...

There's a link to a video on YouTube spreading like wildfire today. It was made by a March '06 mom who lost her 3 yr old ds last year in a car crash and in the video she's pushing for using car seats with harnesses past 40 lbs. (specifically the Britax Regent).

While I think that extended harnessing is a great idea using car seats with higher weight limit harnesses, her video is a bit confusing in that it suggests that you can use lower LATCH anchors to 80 lbs. You must stop using the lower LATCH anchors at 48 lbs. and with some vehicles and car seats, it's 40 lbs. (check the owner's manual). Then you use the seat belt for installation.

The woman who sent this is a safety instructor and the head of the safety tips board for Baby Center.

I think I can, I think I can (says Cole)

Cole is still chuggin' right along today. But we've taken a few steps back. I guess this is what is known as the "preemie shuffle". They all tell me that this is normal so I'll go with that I suppose. Nothing like being a few days from coming home and getting put back in our place for getting a bit too cocky. Don't we know better than this by now? I guess we'll be seeing the new NICU for a few days next week. (BTW, did any of you Capital readers see the article last night on the new NICU unit?).

Cole had another blood transfusion today which hopefully will perk him back up. His hematocrit number was low, which means that his body wasn't producing enough red blood cells to keep things running efficiently. They did another round of blood work this morning and everything came back fine again with regard to any infection or anything scary. Relief. So, this momentary set back appears to be the cause of his low RBC count, and the fact that they took him off of the caffeine. Both of these things are easy fixes so hopefully in the next day or two, he'll be back to his old self. I spent a few hours with him today and he just slept and enjoyed some Mommy time. Hopefully that is just what the doctor ordered!

On a separate subject, a dear friend sent the following link to me today. Rather than forward out the email to a bunch of people, I figured that posting it on my blog would reach all of those people that I would want to make sure saw this. Perhaps you have already seen it but a 2nd reminder can never hurt.

This is a sad video but it's important for all the moms and soon-to-be moms to know about this! It's a G rated video...no gore. It's important & I hope that all of you can take a few minutes to view it and heed the advice. There's nothing more important than protecting our most precious kids.

http://www.youtube.com/watch?v=azgBhZfcqaQ

Back on the rollercoaster

Yep, you read right! We're back on the NICU rollercoaster. I followed the xray machine into the NICU unit when I arrived there this morning - little did I know it was headed to my Son's bedside for an xray. It appears that Cole did not like having his caffiene taken away and he's gone back to having some apnea episodes. If you might recall, when they did the boys sleep study a while back, he was diagnosed with central apnea which means that it's just a maturity thing and he will grow out of it. Apparently he's not quite ready to grow out of it and still needs the caffeine/stimulant support to remind his body to breathe. As a result of his apnic episodes today, he was put back on oxygen again. I hated to see him lose all that ground that he gained over the last several days - but I guess that's all part of the plan.

That said, in order to be proactive and make sure that he wasn't sick or fighting an infection, they ran bloodwork and did a lung xray. All came back clean as a whistle so they have determined that it's simply the caffeine that needs to be restarted. Phew. Within a day or two, he should be back to where he was without oxygen and no random episodes. Poor little guy - he was so tired from working so hard to keep his oxygenation up. We had a relaxing visit and I pep talked him as best as I could. I plan to read him our favorite book again tonight - "I think I can".

So, onward we go. Hopefully we've only been set back a few days and we're going to get this little guy back on track soon. He's trying his best and that's all we can ask right? Thanks for your continued prayers!

11:11

Some of you may know about my obsession with seeing 11:11 on clocks very frequently. It happens so often, and has been happening for a few years, on almost a daily basis; and sometimes I'll see multiple clocks at the same time that say 11:11. The date seems to creep up in other ways too - it's just plain weird! Everywhere I go, I see 11:11. And the strange thing is, that it happens to Chuck too quite often. We've always thought it was very odd. Whenever I would see 11:11, I would say "11:11, make a wish" and you know very well what I would wish for. I would kiss the clock and wish that we would be lucky enough to have a family someday, after all of our struggles.

I have looked up the significance of 11:11 and it is a true phenomenon. There are biblical associations to it, as well as fertility associations within the biblical references. I've always thought that was a bit odd. As we know, there are NO coincidences - so this 11:11 phenomenon means something in my life; I'm just not quite sure what.

When JD came home a couple of weeks ago from the hospital, I was thinking about when Cole might come home after him. I began thinking about the dates. And then I realized that it would be right around the right time frame that he came home around 11/11. And we're right on target. Is that what all of these 11/11 sightings have been leading up to? The day that my family is reunited and home together? We'll see won't we?

Anyone else experience this 11/11 phenomenon? I'm sure I'm not the only one!

"He's your Miracle Baby"

Those are the words recently said to me by the nurse who took care of Cole on his first day of life. I had never asked too much about Cole's condition at birth, for fear of what I might hear I guess. The other day, I asked some questions that I had never been able to bring myself to ask. I was very shocked at the response I got. No wonder I didn't ask before this!

Cindy and Chona were the boys first two nurses; they were wonderful to Chuck that day. They explained so much of what they were doing to Cole & JDand made him feel comfortable that the boys were in good hands and were stable. Very comforting for a first time Dad, with two babies in the NICU. Little did I know, they had also made him aware of Cole's very scary prognosis. He was on the edge of living. Thank goodness nobody told me that or let on any such thing.

Not once did I ever have a doubt that he would make it. I will admit, I often worried about his long term damage from going through as much as he did. But never did I lose hope or faith that he would grow and we would take him home. I just didn't know when that might be. When I asked why they didn't tell me that, she of course said, "why would we do that? Your job as a Mom is to believe in your kids and love them enough to push them through anything!". How right she was.

Cole was VERY sick - and mostly due to the twin to twin transfusion syndrome that was going on in utero between he and Calvin. Nobody knew the extent of this issue until after they were born. And none of the NICU staff thought he would make it. He was greatly compromised at birth - he was severely anemic, which affected most of his organs in one way or another. He was tiny and he was weak. But he fought his little heart out and look at him today. When I arrived this morning, this little precious face, with wide eyes, greeted me. It just made me cry immediately and once again, reminded me to thank God for this precious little life that has blessed us.



I can tell already that his personality is going to be one of a fighter. He'll be one who never gives up. He'll be one who works hard for everything he will be. He'll always know that he had an identical brother who carried them through as long as he could. He will always be our hero ~ and we'll never take life for granted again. He is truly our Miracle Baby.

Weekend Updates...

Well, I published a post last night but somehow it got lost. Suffice to say that I was sounding pretty negative anyway so it's a good thing that it got lost in cyberspace. You don't need to hear me rant. After getting two new room mates in our TINY room (twin girls arrived last night, for a total of 4 babies in an 8 x 12 room), I was at the end of my rope. In our small room, there were FOUR babies in cribs/isoletes, THREE nurses, TWO sets of parents, THREE rocking chairs and a partridge in a pear tree. This hospital gig is getting the best of me. But after getting a renewed plan for Cole, my attitude is back on track.

Here's the weekend scoop. First, I will say that Cole is doing excellent and getting the hang of this feeding thing finally. We have a plan for this week and that is that he is home within the next FIVE days. That means by the end of the week, we might have both boys home finally!

They have stopped Cole's caffeine to see how he does without it. Hopefully he'll be fine and will not start having any episodes (A's & B's). He's been episode free for a couple of weeks now so we're hopeful that he will continue with that trend. Assuming that he goes 5 days without any significant "events" and he's eating 8 bottles per day, we're out of there!

JD continues to do great too at home. He loves being here at home and is eating like a champ (as evidenced by the photos below of his chipmunk cheeks). We have discovered an uncanny resemblance between JD and my baby pictures. He's definitely got lots of the Leach side in him. I still haven't stopped staring at him endlessly.

The new NICU unit at AAMC was unveiled today and it's absolutely beautiful. And it's so different from the existing NICU unit. The patients will not be moved until 11/14 which is still 9 days away so with any luck, we will NOT have a chance to reside in the new unit. But suffice to say, for any of you NICU mom's who have been at AAMC, you would be SO impressed. Words cannot even describe how awesome it is. It's huge! And it has individual rooms for each patient, complete with a sink area, flat screen tv and new kangaroo chairs. It's so welcoming and calming - and an all together different philosophy of care. It is MUCH more patient friendly and so great for privacy for the families. It's just awesome. Although I would rather have my baby Cole home any day, I am a bit sad that we may miss this new experience. The nurses are very excited and I hope that it's an easy transition for them all.

As the final discharge day nears, I have found myself feeling a bit nostalgic and sad - in a weird way. The nurses have become my extended family. And the daily hospital routine has become my life. Don't get me wrong, I welcome the change and the idea of getting our life into a routine with our new family. But I must say, it will be an adjustment. They say that anything you do for 21 days becomes a habit. Well, I would definitely call my hospital trips a "habit". I wake up knowing that I will be going there and seeing my baby. I was talking to Jack's Mom (our roomate) today and we both think it will be an odd adjustment when we don't have to go to the hospital any longer. It's amazing how that happens.

Thank you all for your continued thoughts, prayers and messages. We are getting close now and I can hardly believe it. Your support has been amazing and we certainly would not be where we are today without the love of our families and friends. We'll keep you posted as the week rolls along - I can't wait for the day when I can write and say "WE'RE HOME"!

Like Father Like Son

JD & Daddy had a fun boys day on Sunday - the first of MANY!

Go Redskins - beat the Cowboys!



Phew, that exciting game wore me out!