We're together again, at last!

Just a few snaps from this morning's visit. After many requests, they put both boys in the same bed together, FINALLY! Cole is on the left and JD is on the right.

We are 6 Weeks Old Today!

I can hardly believe that the boys are 6 weeks old. WOW. They have changed so much. They both had a good day today and are growing well. We spent lots of time together yesterday and today. I got to Kangaroo with both of them for a few hours yesterday and it was wonderful. I have missed doing that since they are in clothes now so it was a special treat for all of us. Yesterday was a tough day, for obvious reasons so it was nice to be able to spend time with the boys and be thankful that they are here with us; they are such big (little) blessings to us. It's so awesome to be able to walk into thier room in NICU and just pick them up and hug and kiss them. We've waited so long for this day!

Still not sure if they are really going to start bottles this week or not - we're waiting to see. Cole has weaned down on his air flow in his canula now which is great. The next step is that they will take it away and see how he does. The bigger he gets, the better he gets with his respiration. Slowly but surely he's able to hold his own. Both boys are quite little characters - I have included some photos from today that show their most recent changes. Note JD's little thighs and cheeks! Soon we will be able to see them without tubes and tape on their faces.

The first two photos are of JD...





And here's Cole...

Words of Inspiration

With the help of Clarissa Pinkola Estes (Author), I pass along the following words of inspiration, as sent to me by my loving Mom today. It was too inspirational not to pass along to those I care about so much. We can all be better people, each and every day.

I assign you to be a beautiful, good, kind, awakened, soulful person, a true work of art, a true human being. In a world filled with so much darkness, such a soul shines like gold.

Anything you do from the soulful self will help lighten the burdens of the world. Anything. You have no idea what the smallest word, the tiniest generosity can cause to be set in motion. Be outrageous in forgiving. Be dramatic in reconciling. Mistakes? Back up and make them as right as you can, then move on. Be off the charts in kindness. In whatever you are called to, strive to be devoted to it in all aspects large and small. Fall short? Try again.

Be brave, be fierce, be visionary. Mend the parts of the world that are within your reach. To strive to live this way is the most dramatic gift you can ever give to the world.

A tribute to Jonas

Some of you may remember me speaking of a new friend that I met while I was in the hospital for my extended stay. Her name is Sam. She was another anti-partum patient (someone there before baby's birth) who was 4 days behind me in her pregnancy. She came in after I had been there about 3-4 weeks and we had been connected through a friend of mine who knew her sister in law (one of those small world connections). We corresponded through email while we were both on bedrest and once I had the babies, I went to visit her a few times over the last few weeks. She was able to hold out longer than I did and delivered a baby boy, Jonas, at almost 34 weeks, this past Saturday.

Sadly, her little angel did not make it and passed away earlier today, after a fight for life for a few days. Knowing yesterday that their baby was sick, we prayed that he would pull through and that the NICU team would be able to help him survive. They did all that they could for him but he was called to heaven. His time on earth was up - way too early. Please keep Samantha and her family in your prayers as they struggle through this very difficult time. Once again, we are reminded that life is so fragile.

Sam & Jason, our hearts are heavy for you and we hope and pray that your love for Jonas will help you through this difficult time. Samantha was one brave and patient Mommy, two qualities that make her such an inspiration. Her attitude and persistence were amazing - and it's just not fair that her little one was taken from her so soon. Please hold them close to your hearts.

Look Mom, they let me out of my box!

It's an exciting day for Cole today - he is out of his isolete and into an open crib!!! When I arrived this morning, they were getting his new bed ready and we got him all snuggled in. Here's a photo of him in his new bed - burrito baby!



The boys had a pretty good night last night. Cole was up 10 grams and JD was down 10 grams; JD was retaining some water yesterday so they gave him some lasix which is why he was down a bit. He looks much better this morning now that he's not puffy. Here's a new photo of JD. He's showing us how BIG he is! Soooo big!



This photo shows both boys in their cribs - you can see JD in the background.



I spent the weekend getting things ready around the house for the boys. I got the stroller out and put together (which I love, thanks Gramma!) and the car seats too. I'm going to go read up on installation of the car seats now and get to one of those free places to have them check the installation this week. The boys room is all finished and ready. Here's a photo...



The clothes are all washed and ready. The extra changing table is here and will be stocked and ready. Now all we need are the babies! Maybe by the end of this week we'll have a better idea on when they might come home. It's only a matter of a few weeks now. We can't wait! Hope you guys are enjoying the weekend - fall has certainly arrived here in Maryland. Headed out today to buy pumpkins for my "pumpkins"%

Updated Stats - 5 Weeks and 2 Days Old

I finally remembered today to ask for some updated stats on the boys. As of 10/3/06:

Cole
Length: 14" (up 2" since birth)
Weight: 2lb, 8.83 oz
Head circum: 11"

JD
Length: 16" (up 2.5" since birth)
Weight: 3lb, 6.56 oz (he gained 1 more ounce tonight)
Head circum: 11.5"

Both boys had a very quiet day today. Their new OG tube placement is working! The reflux is definitely better and their episodes have really decreased. There is talk of starting them both on bottle feeds next Wednesday to see how things go. Very exciting. We spent lots of good time with the boys today and even got to read a new book together.

I took this picture of Cole today because they put booties on him for the first time. He looks rather irritated, doesn't he? He's so cute though - I can barely stand it!

Reality Check...

Today was a reality check for me in many ways. We had our meeting with the Neonatologist which was really pretty much uneventful. We reviewed the boys since birth in terms of what kind of issues that they have had, various meds etc. Then we discussed what kind of care they will require once they get home for their first few months (meds, home monitors, doc visits etc.). We didn't really learn anything we didn't already know - which is a great thing. They keep us very well informed and are always available for my millions of questions each day. No talk yet of homecoming dates but we're getting close.

But reality hit me that these guys might really be coming home! And what an AMAZING realization that was! For so many months, I never knew if I would ever come home with babies. As pessimistic as that sounds, after going through so many losses, including losing Baby Cal and all of the other potential issues, I have never been able to fully accept that I am a Mom and I might bring babies home with me. Honestly, I'm still not quite there ~ but I'm a heck of a lot closer than I have ever been. And reality is, I just can't wait to get these guys home. They are safe where they are now, and they are not quite ready to go yet. But we're getting closer.

Both boys are doing pretty well today; they both put on good weight tonight - Cole was up 50 grams and JD was up 20; both were very bright eyed for our visit tonight. I just love seeing them so alert. Cole is looking more like JD to me these days. I guess it's because he's getting some little cheeks now. It will be fun to see them side by side soon when they both are "tube free". That tape on their faces just doesn't give us a good look at their little faces. Soon enough though.

I was wondering to myself today what it will be like in the next few weeks once we get home and I don't have to go to the hospital any more. I've been there every day since July 27 - and lately, it's multiple times per day. That's crazy isn't it? I think my car can drive there by itself. I know all of the valet parking guys. I know which doors are open and locked at which times. I know where all of the restrooms are in the entire hospital. The front desk nurses recognize us now - AND our entire family. As we were walking out of the hospital tonight, my Mom was trying to convince me to "sleep in" tomorrow. Ya know, she has a point. My days of sleeping in are numbered. BUT, as some of you Moms would know, having babies in the hospital doesn't usually lend itself well to sleeping in. There's no place I'd rather be than at their bedside. And for now, that is my job. So, although it's almost 11pm and I have no intention yet of packing it in for the night, I'll get up early, shower and roll out at o'dark thirty. It's just a habit now I guess.

5 Week Birthday

Well, the boys celebrated their 5 week birthday today by having multiple episodes and giving their Mommy fits all day. Not a great day for any of us but hoping for a better one tomorrow. As they say, the rollercoaster continues - just thankful that the "bad" things are only reflux and apnea episodes. It could be MUCH worse! They moved both boys feeding tubes lower into their GI tract so that the reflux might get better. Again, not too uncommon to do for reflux'ing preemies. They did Cole's earlier today and it seemed to take him a few hours to get settled down. Of course, that had to be during the same time that I was there (gray hairs already appearing). JD's didn't get done until second shift this evening - hopefully he did fine with it. We skipped our evening visit tonight since both of us were there later into the evening again. We were waiting on the ENT to do his follow up exam - and everything looked fine on JD, as it did last night.

Both boys had a good weight gain last night (+25g - very twinlike of them to gain the same amount) and they both are holding their body temperatures nicely. Cole's isolete is weaning down in temp more each day so hopefully he'll be in an open crib too, very soon.

Not much else to report - we're both pooped and I'm emotionally drained for today. Off to park it on the couch for the evening. Busy day tomorrow so might not get to post until late. We have a consult with the neonatologist tomorrow at 1pm to summarize the last 5 weeks and find out what is ahead. I'm really looking forward to that, as we have not yet had that kind of meeting since we've been in NICU. We rarely get to talk to the doctors one on one so it will be a good thing for us. Until tomorrow - sweet dreams all!

33 Weeks gestational age & Cole's catching up!

We hit a few more milestones today, just in time for their 5 week birthday! Well, I should actually say COLE hit some milestones today ~ it's amazing what a few ounces will do.


Cole in his new duds! (he's a little frazzled in this photo since water went up his nose from his nasal canula - not his best Kodak moment but at least I got it on film!)

Cole gets to wear clothes now too - he's not in an open crib yet but he's swaddled and has clothes on! It's really cute seeing him because he's still only about 2.5 lbs. and obviously, there are not clothes that fit a little boy that small! But he looks extra cute with too long sleeves and too long pants. He also was weaned down on his oxygen today to 1 liter of flow; and he's still on room air. The next step is he gets rid of the oxygen all together! We're not far from that I don't think. We'll just hope that he continues to do well with the lower O2 level so he can keep working toward getting rid of all of it. Then we can see his adorable handsome face better. We're ready for all of that tape to come off. They moved his feeding tube today to his nose which is more comfortable for him as well.

Both boys got their first real shots today; they got the EPO shot (I can't remember the formal name) but it's to help their body manufacture red blood cells a little better. Most preemies are on this apparently. Just a boost for their system. Both did GREAT - not much crying at all. I was there and pretty nervous to see that but they did really well. They are strong little boys!

JD was visited by the ENT this evening (I spent many hours there today waiting for the doc who finally showed up at 7:45pm) and he got a good report. He basically said that his system is still maturing and his airway is a bit "floppy". In a nutshell, it means that when he falls into a deep sleep, his airway collapses, much like an adult with sleep apnea disorder. He doesn't see anything wrong right now structurally so we're going to wait and hope that it will get better as he gets older. This is exactly what everyone figured that he would say but they just wanted to be sure. As I always say, better to be proactive than reactive when it's too late. Other than that, JD is holding strong and keeping his body temperature up nicely in his open crib. Weight gain last night was good for both too; can't wait to see how they do tonight.

Here are a few pictures from today - thanks for your continued thoughts and prayers. We feel them daily. You guys rock! Tomorrow the boys will be 5 weeks old already.

Cole snoozin'


Mommy & the boys

Open Crib, here I come!

We were so excited to find out this afternoon that JD was moved out of his isolete into an open crib today!!! It is the same as the regular bassinets that full term babies go into when they are born - very exciting day for us all! JD has been working on keeping his body temperature up for a few days and he did well with it so they have moved him out of "the box". It's so awesome to be able to look at him up close and personal when I walk in and not have to look through the glass. We hope that Cole will be a week or so behind him; he has a bit more weight to gain before he'll be able to move out of his little house. They usually like the babies to be about 1500 grams before they can move - he's at about 1110 right now so within a week to 10 days, he should be there. Maybe a bit sooner if he's feeling really ambitious!

The sleep study results came back this weekend. I don't know why they called it a sleep study because it had nothing to do with monitoring their sleep; but anyway, JD has severe reflux, which we already knew. Luckily it doesn't appear that he has acid reflux though, so that is a plus. It just means that he is not having acid sitting in his esophagus as he reflux's. He has an appointment with an ENT doc tomorrow so it will be interesting to see what he has to say. They are going to take a look at his throat and belly from the inside (apparently not too painful and very quick as they just put a tiny scope down to look around). Cole's results were actually a bit better than JD's - they said that he does not have reflux too bad and many of his apnea episodes are due to prematurity. In other words, he will grow out of it and get better as he gets bigger. We were very happy to hear this, especially because we thought he was worse off with the reflux than JD was. Their apnea and brady episodes have gotten a lot better over the last few days so I think with their growth and the meds, they are doing MUCH better.

Both C. and I got to hold the boys for a while today - they were doing great. They stay awake so much longer now when we are there and definitely recognize our voices. Both are really doing well with their pacifiers so we're hopeful that bottle feeds are not too far off at this point. But until the reflux is under control, they will stay on the continuous feeds through the feeding tube.

Not much else to report tonight ~ all in all, they had a very good weekend. We are so thankful for every day that goes by that they are doing so well. We couldn't ask for anything more. Here are a few photos from tonights visit. It's nice to be able to take pictures of JD without having to look through the glass! We took a few with Daddy's hand in the photo so you can get some perspective on how small they still are. JD is weighing in at about 3lb, 3 oz and Cole is about 2lb, 7.5 oz. They are really starting to pork up!

JD





COLE