Happy Halloween!

Since my pumpkins have grown so much over the last 10 days, they don't fit in their Halloween costumes any longer! So, that said, they are dressed up as "JD & Cole" tonight instead.

JD and I are manning the door this evening - passing out candy to the kids and beers to the "big kids". We have such a fun neighborhood. I can't wait until next year when we are buzzing around the neighborhood with the boys in a wagon - our first REAL Halloween with our own kids. I was reflecting earlier on how much fun Halloween used to be when we were kids. But, the one thing I remember not liking were those cheesy plastic costume masks that we used to have. Remember the ones that used to come in the box with the cheesy polyester one piece suit that tied in the back? Remember how hot they would be on your face and you would always sweat like crazy underneath? And remember the tiny slit they had in the mask for the mouth? Was I the only idiot who consistently cut my tongue on that thing trying to stick my tongue through the hole? Ah, those were the good ole' days. Costumes are so much better these days. Now I sound old, don't I? Ugh.

I was holding my breath this morning when I woke up too because traditionally last night was mischief night. Thank goodness that tradition has somehow died out, at least around our neighborhood. I didn't see a single square of TP this morning in the trees - as irritating as it is to see, what fun it was to "decorate" the neighborhood incognito.

Here's a picture of JD helping me pass out candy - as you can see, he's pretty interested?!?!?
Hope everyone had a safe Halloween and your kids are not too crazy with all of the sugar. On second hand, what fun would Halloween be without a sugar buzz and a meltdown to follow right before bed? Hope all of your little pumpkins, ghosts and goblins got lots of loot - and lots of good stuff for you parents to eat too!

37 Weeks (corrected age)

And almost 9 weeks, real age! And we're still making great progress! Cole has been without his oxygen for over 24 hours and breathing like a champ. He's still bottling well - but still only at every other feed. If he continues to do well through the night, my guess is that they will increase his bottle feeds to every feed ~ but leaving his tube in for a short while to be sure that they have a way to feed him if he gets lazy for a feed or two. It's so tiring for them to learn how to do 8 feeds per day so it takes a few days to build up a tolerance and save the energy.

Here's a picture from today - I swear, he changed overnight! We're hoping he hits 4 pounds tonight - he was 3lb, 15oz last night.

Cole's Rockin' & Rollin' tonight!

At the risk of getting too cocky, it is with cautious optimism that I tell you that Cole is currently off of his oxygen and holding his own very nicely. They are not making any promises but we've got our fingers crossed that he'll be able to last through the night without having to have it back. We'll see. In any case, it was a beautiful sight to see my little hero without his nose tube for the first time! The only tube left is his OG tube for his feedings. And we're working on getting rid of that one too. Then he's HOME FREE!

He's rather handsome I think! Can you believe how plump he's getting? Now we are really starting to see a resemblance between the two boys. On that note, time for bed. Night, night.

New Pics

Here are a few new pictures;

Cole when he was wide awake for one of my visits yesterday;



JD's a happy camper in his swing!

Weekend Update

We're all doing great - it's been nothing but fun having JD home! We've been shuffling between home and the hospital all weekend which is a bit hairy but we're doing fine with it. The nights have been easy so far - JD sleeps right through to his next feeding. He's spending more and more time awake during the day now which has been so much fun. His first pediatrician appt went great - he was up from 5lb to 5lb, 5 oz. The doctor said he looked great. I took him on another road trip yesterday to Grammy's house for a few hours while I went to visit Cole. She loved having him and he did great. He's an easy guest for now - just wait until this time next year though - they will be wreaking havoc all over Grammy & Grampy's house!

Cole is doing very well too - he's up to 3lb, 14 oz now! He's going to hit 4 pounds in the next day or two. He's still having some trouble weaning off of his oxygen but they are taking his nasal canula off for a little while each day to see what he can tolerate. He's eating bottles 4 times a day, and being tube fed 4 times a day. They will hopefully get him to have more bottles later this week as he gets better at it. We'll go see him again tonight and give him another pep talk. I'm hoping that when he hits that 4 pound mark, he's going to start sailing along and will be home in no time.

That's about it for now. All is well on the Licameli home front - we're just waiting for our other little guy to come home. Today is a football day for Daddy & JD - somehow I knew it wouldn't take long!

A Preemie's Bill of Rights

Another one worth sharing. This is awesome; I just love it. If interested, you can order framed copies. I plan to order one for our local NICU. They practice each of these to their fullest potential and I feel so fortunate for that. Our kids could not have had any better care. Let me know if you're interested and I'll give you the info.

A Preemie's Bill of Rights
by Read McCarty

I DESERVE to be understood and treated as the Individual I am. I deserve to have my language of cues and signals understood by you, my caregiver. My grimaces, hand stretches, frowns and hiccups are as meaningful as any words, but delivered in the only language I know.

I DESERVE your recognition that I may be completing many months of my physical and neurological development outside the protection of my mother's womb. Even as you give me he life sustaining care I so badly need, as much as possible I deserve to have the boundaries, quiet, warmth, gentle stimulation, dim lighting and fetal positioning I would have in my mother's womb.

I DESERVE periods of uninterrupted quiet so I can use my energy to grow and not hopelessly trying to overcome excess light, noise and overstimulation.

I DESERVE the warmth, tenderness and comfort of being held by my parents as soon as they feel comfortable and when my medical condition allows.

I DESERVE the positive energy of love...your kind thoughts and words as you care for me...my father's soft touch...my mothers gentle words...a volunteers quiet rocking. I deserve these things because in your heart you know their worth even though their absolute clinical value may never be proven.

I DESERVE your understanding that what is normal and routine for you, as my caregiver, is abnormal and frightening for my Mom and Dad. So please answer kindly no matter how many times they ask the same question. They deserve your support and understanding and the support of other families as they go through the roller coaster experience of the NICU.

I DESERVE your recognition that my parents are an integral part of my caregiving team and should be allowed and encouraged to the best of their ability to help care for me during my stay in your hospital.

I DESERVE your understanding that part of your job is to help my family bond with me as we learn to trust each other in preparation for my homecoming.

I DESERVE the continuity of care from the NICU to my home...from my neonatologist to my primary care giver...so together my family and I can reach our full potential.

YOU DESERVE MY THANKS AND RECOGNITION I AM HERE BECAUSE OF YOU!

To the fellow NICU parents...

Thought you guys would apprciate this. Every single one of these is so true!

You Know You're The Parent of a Preemie When...

1.You use strange initials (C-PAP, CCs, NICU, NG) when discussing your child.

2.You actually remember how many CCs make up an ounce.

3.You count his weight in grams.

4. The skin on your hands is peeling from washing so often!

5.You hesitate when someone asks his/her age, but you know exactly how much he/she weighs!

6. The answer to "How old is your baby?" is a story 30 minutes long!

7. When someone asks his birthday, you reply, "Which one?"

8. You start to understand some of the things they say on ER!

9. You turn into Kung-Fu Mom when someone tries to touch your baby.

10. You attempt to measure just how much spit-up he/she just had before you clean it up!

11. You know how much he weighs before putting him on the scale at the doctor's office

12. You cry at Maternity Ward and get mad at Baby Story.

13. You see a 7lb newborn and say "Wow! She's so BIG!"

14. Your baby is months old before he can even go to the mall.

15. You have never explained why your baby is on an apnea monitor.

16. When someone says how tiny your baby is, you argue that he is huge -- and to demonstrate, you whip out pictures of him in NICU.

17. You do a health check on people when they come to your house to visit .

18. You make people wash their hands before going near your child.

19. You want to scream when someone says that she just wants to have this baby now - at week 28, 32, or 34.

20. You are so amazed when someone actually tells you your baby is big for his age!

21. You tried to find a place to buy newborn size diapers in bulk.

22. You called half your relatives when the baby grew out of their first pair of pajamas!

23. You never take your child for granted.

24. You worry about RSV season and it is still weeks away . . .

25. You know what "RSV" stands for.

26. You donate his/her tiny clothes to the NICU and marvel that they seem so small - when they were too darn large!

27. Your son gets a simple cold and her doc sees her within the hour!

28. People say, "He CAN'T be __ old...he's too little!"

29. It has taken them 5 months to grow INTO newborn clothes!

30. You pick up 2 pounds of ground beef and think that your baby was born at the same weight

31. You buy "Purell" in bulk

32. You can stare at your baby for hours when he sleeps

33. You know about oxygen tanks and regulators more than the company supplying it to the airplanes

A Mom's Life

I'm speechless. What a day today. It is so much fun having my baby JD home ~ we had such a fun night last night and fun day today. We did much of nothing but I watched him sleep a lot in between feedings and diapers; my heart has never been so full. Thank you to everyone for your wonderful messages. You all never cease to amaze me with your outpouring of love and support for our little family.

Both of the boys are doing great today. JD is happy as a clam and Cole had another good day today too. I still have a heavy heart since he's not here but I did get a chance to spend a couple of hours with him today and plan to go back tonight for his 8pm feeding. Daddy stopped on his way home too so he got lots of visiting time in.

We have our first pediatrician appt tomorrow for JD. They require the babies to be seen by their pediatrician within 48 hours of discharge. I can't wait to bundle him up and take him out again! He's sleeping soundly right next to me on his boppy lounger - what a great invention that thing is!



So, yesterday was a great day, once we got things rolling for discharge. It's an amazing production to get out of there. Aside from the fact that you have to be discharged at the nurse's convenience (much like any other hospital discharge), they had to prepare the medical records for us to take to the ped, re-teach us CPR, go over the medication schedule and dosages, finish his immunization record, make sure our car seat was "approved" etc. They really go the extra mile to make sure that parents are fully trained, informed and comfortable before taking their babies home. I think that is the consensus with the entire staff at AAMC - NICU or not. Once we got the go ahead to prepare to leave, we dressed our little guy in his going home outfit and started with our goodbyes. Many of the nurses came in to say goodbye to JD - he's considered one of the long termers so they all really were happy to see him be able to go home. It was a total fiasco wheeling out of there (car seat gets wheeled down in the baby bassinet). Poor JD was on overload with all of the nurses right in his face. It was really cute. We got home and I showed him around his new house while he slept.

Daddy did great with him while I visited Cole last night - that's what you get when Daddy is so involved in the care at the NICU. They know what they are doing when the babies come home - well, sorta. But it's a great arrangement for us in the evenings so that we both have some time to see Cole. Speaking of which, I just returned from hanging with Cole and he's doing really well tonight. We're still a week or two out from homecoming but every day is a milestone! Hoping for some more weight gain tonight - he's almost to FOUR pounds!

Here are a few more snaps of JD from today. We tried out all of the "baby goods" today. Some more fitting than others...

This is our "infant to toddler" highchair, without the tray of course. So apparently a preemie is far from an infant. He's swimming in it! Not for long, I'm sure...



Life is good!

Homecoming Day!

One down, one to go! We made it home! JD loves his new home, or at least he appears to. He's rather cozy and has slept since he got home.



Here are a few pics from today. I'm short on time as I'm prepping the 8:30 feed for Daddy to do while I run up to see Cole at the hospital. Cole is doing great by the way - he's got some added incentive now that his little brother got to go home. Enjoy and I'll post some more details tomorrow.

Here is JD's going home outfit. This is the sweater jacket that Mom made for me when I was born, which I wore home from the hospital. Toby (my brother) also wore it home, as did his daughter Emily a little over a year ago. What an heirloom. And a beautiful one at that! Grammy's knitted things are the BEST!



I'm not so sure about this carseat idea Mom?



Ah, now that's a little better. I can get used to it I guess.



Mommy and Daddy are so happy and proud to have JD home finally! Despite the tears on the way out of NICU, the nurses made a BIG fuss over JD's departure.





And by the way dear friends, all of the comments on yesterday's entry were so heartwarming. You guys are truly the best!!!

We're having a slumber party with JD!

WOW, I'm over run with emotion tonight. We are "rooming in" with big boy JD (who by the way, hit 5 pounds tonight!) at the hospital - I guess they like to test our parenting ability before we take him out into the big bad world by ourselves. It's so much fun! They have us in a room downstairs from the NICU so we have a shot at this parenthood thing without any help for the night. I wish I put a bit more thought into making it more festive but I was so worried about getting to this point that I didn't think about what we would do in our room once we got him here. Oh well. I find that just staring at him with no tubes or wires is actually plenty fulfilling.



Here he is, watching his first (of many) World Series with Daddy. It's game three of the world series between Detroit and St. Louis. STL is ahead, 2 to nothing. Unfortunately, JD is sleeping soundly through the game, but he must be wondering what that sound of the tv is since he's so used to beeps and chaos. I wonder what is going through is little brain? We're about 30 minutes away from his next bottle so that is probably what he's dreaming about huh?

Tomorrow is a day that we have waited so long for. And until yesterday, I never really let myself think too much about their homecoming date because I've been cautioned for so long to just take it one day at a time. It will be one of the happiest days of my life thus far. And it will be tied with the day that Cole gets to come home, in the next week or two. Having both boys home will be heaven for both C. & I. It's time for us to get our family home and get on with our lives. We've been in limbo for so many months.

I know that leaving Cole here tomorrow will be awfully hard; and I'll cry my eyes out. But I'm sure that my tears will also be tears of joy, that we get to take one of the boys home. It's a bittersweet day - like so many others we've had throughout this journey.

Cole has really picked up the pace today ~ he's doing great with his feedings and his weight is increasing nicely each day. He knows that JD is leaving, I'm convinced. And he's going to do his darndest to follow closely in his foot steps. He's a fighter and he never gives up - I'll never underestimate him, that is for sure! He's our little miracle baby.

We're scheduled to be discharged sometime tomorrow (Wed). Which will be 8 weeks and one day after the day they were born (36 weeks and 2 days old gestational age). That's pretty good for preemies born at just over 2 pounds. We've come a long way baby! Until tomorrow - wish us luck tonight. And a little bit of sleep!

P.S. - The photo below is of C. snuggling in on THE COUCH for the night. After so many nights on the brutal couch while I was on bedrest, let it be known that I offered the bed and he declined it! He's actually more attached to the couch than he will ever admit I think....

No tubes Mom!

Boy, it's been a while since we've seen JD without tubes!



He's got everything out now and is bottling like a real baby. It's tough to get him to take the whole thing but he's doing a great job. He usually falls asleep before he's finished so we are working on keeping him awake better. He's only taking 45 cc's right now, which is about an ounce and a quarter so you can see that it doesn't take much to tire them out. We took the car seat in tonight to have the "car seat test". They have JD sit in the carseat for one hour and monitor him to make sure that he sats (oxygenation saturation) above 90 the whole time. This is actually a tough test for these little guys. But they want to be sure that while they are in their carseats, they won't have any episodes. Makes sense to me. We'll see how he does with that....

Cole is doing great too - they have weaned his oxygen down to 1/8 of a liter still and room air; his episodes have decreased a great deal and he's eating more now. They have switched him to compressed feedings instead of continuous so this is a great milestone for him. He's following the same path as JD so we're hopeful that he's catching up!

Here's a recent picture of Cole from today.



I have also included a few photos of their cribs - just showing how we have decorated their little "space". There are lots of sentimental things in there for the boys - many things that have been given to them by the nurses and other caregivers at the hospital. What an amazing place the AAMC NICU is. We feel so blessed to have them taking such wonderful care of our children.

This is JD's crib.



And this is Cole's crib.



I plan to spend my days now at the hospital for most of the day, doing as many feeds as possible so that I know what I'm doing. I also am trying to spend some quality time with Cole since he will have to stay once JD comes home. It will mean less time to spend with him during the day which will be hard. But hopefully he'll be right behind within a week or so. We're getting closer to Homecoming!

Good Weekend for the Boys!

Just a quick update: Boys had a good weekend. Both are eating well and growing like they should. JD is now taking bottles at every feed, however he poops out easily so whatever he doesn't take in his bottles goes into his tube as a bolis feed. He's made good strides toward taking 8 bottles a day - it's just that bottling takes a lot of energy so after a few consecutive feeds, he's very tired and can't make it through a bottle without falling asleep. Right now, he's taking 38 cc's which is just over an ounce of formula. That will increase as he continues to get bigger. He's about 4lb, 10 oz now.

Cole is taking three bottle feeds per day, and still on his continuous feeding through the OG tube. He's gotten the hang of the bottle so we're hoping he can increase his bottle feeds more this week. He's not growing quite as fast as JD - but he's up to 3lb, 6 oz right now. Not as big as JD, but just as feisty! They have weaned him down even lower on his oxygen so the next step will be to take it away. Yay!!! He seems to be holding well at the very low level he's on (1/8 of a liter flow rate, basically room air).

There is talk of discharge for JD this week so we're keeping our fingers crossed. At the moment, it does not look like JD will come home with a monitor. He has not had any episodes (A's or B's) for quite some time so if he can continue with that trend, we'll be monitor free for him. We are so ready for them to come home! It will be extremely hard to leave Cole behind but we know that he just needs another week or two and he'll be home too. These guys have come so far - it's truly amazing that they are doing as well as they are after only 8 weeks.

We'll keep you posted. Thank you for your continued prayers and support. I continue to be amazed that our little family is almost together, at last!

BOO!

Happy Halloween!

Great reminder

Most of you have probably seen this email come around lately - sorry if it's a repeat. It just struck me today and figured I would share it with everyone. I love you all!!! Be good to each other and remember the true meaning of FAMILY.

F A M I L Y

I ran into a stranger as he passed by,
"Oh excuse me please" was my reply.

He said, "Please excuse me too;
I wasn't watching for you."

We were very polite, this stranger and I.
We went on our way and we said goodbye.

But at home a different story is told,
How we treat our loved ones, young and old.

Later that day, cooking the evening meal,
My son stood beside me very still.

When I turned, I nearly knocked him down.
"Move out of the way," I said with a frown.

He walked away, his little heart broken.
I didn't realize how harshly I'd spoken.

While I lay awake in bed,
God's still small voice came to me and said,

"While dealing with a stranger,
common courtesy you use,
but the family you love, you seem to abuse.

Go and look on the kitchen floor,
You'll find some flowers there by the door.

Those are the flowers he brought for you.
He picked them himself: pink, yellow and blue.

He stood very quietly not to spoil the surprise,
you never saw the tears that filled his little eyes."

By this time, I felt very small,
And now my tears began to fall.

I quietly went and knelt by his bed;
"Wake up, little one, wake up," I said.

"Are these the flowers you picked for me?"
He smiled, "I found 'em, out by the tree.

I picked 'em because they're pretty like you.
I knew you'd like 'em, especially the blue."

I said, "Son, I'm very sorry for the way I acted today;
I shouldn't have yelled at you that way."
He said, "Oh, Mom, that's okay.
I love you anyway."

I said, "Son, I love you too,
and I do like the flowers, especially the blue."

FAMILY
Are you aware that if we died tomorrow, the company that we are working for could easily replace us in a matter of days. But the family we left behind will feel the loss for the rest of their lives.

And come to think of it, we pour ourselves more into work than into our own family,
an unwise investment indeed, don't you think? So what is behind the story?

Do you know what the word FAMILY means?
FAMILY = (F)ATHER (A)ND (M)OTHER (I) (L)OVE (Y)OU

Mommy got to feed the boys!

Today was my first shot at feeding my boys - what a special day! Here are some pictures of our first "bottling" together.

Mommy & JD



Mommy & Cole



Lots of great strides today. Wednesday is "re-write" day in NICU which means that the nurses re-write orders for the upcoming week with regard to feedings, meds etc. They try to stick with a plan for a week or so and tweak it throughout the week as needed. It just gives them a baseline plan for each baby for a given week.

The following changes were made today - all of which are getting them closer to coming home!!! They both had their 2nd eye exam today which showed great results. Their eyes look good and there are no issues to be concerned about at this time.

JD - They changed his lasix (for fluid retention) to Dyerell which is a different diuretic which should work better and be less strenuous on the kidneys. He has moved to compressed feeds (no more continuous feeds) and will be fed every 3 hours, over a period of 2 hours at a time. In other words, the tube is still in and every 3 hours, they feed him either via tube or bottle. The bottles alternate with every other feed and when he gets the bottle, he's allowed to eat as much as he wants, as long as he eats a minimum (I forget what that number is but the max is 38 cc's). We're hoping he'll just chow down on his bottles! JD also had his oxygen monitor (pulse ox) removed since he was not having any episodes. We're hopeful that this will last and he will continue to not need it. The best part of that is that the monitor doesn't ding any more - big smiles for that!

Cole - they pulled his NJ tube today which was the tube in his upper intestine. Now he just has his stomach tube and all of his feeds are back to going into his belly. This is HUGE for him! So far, both boys reflux has not gotten any worse so with the prevacid that they are on, it appears to be controlled for now. They both are holding down their feedings and don't seem uncomfortable at all. Cole is still on continuous feeds, changed every 3 hours. Every 6 hours he will get a bottle of 9cc's. They increased his feedings today from 8cc's per hour to 9cc's per hour.

Both boys had their regular meds increased since they have gained weight. Cole is now 3lb, 5 oz and JD is 4lb, 6 oz.

That's about it for updates. Here's a cute photo of JD from Grammy's "photo shoot" this afternoon!

Gramma's Visit!

This photo is long overdue - the earlier photos are on a disposable camera somewhere that I cannot locate so here's a new one!

Gramma and JD spend some quality time!
(I'm not sure who is happier here!)



Both boys did very well again today with their bottle feeds. They are both gaining weight and coming right along. We actually went to our "discharge class" tonight which prepares us for coming home. Well, sorta. They go over all of the preemie basics, infant CPR etc. It was very helpful - yet very scary! We're not making any predictions yet but we're a week or two away from JD's homecoming I think.

Cole is a little behind him and has a few more hurdles to conquer. But hopefully he won't be far behind. Although it will be hard to be in both places at once with one home and one not, I would rather someone be home so we'll take it. We'll do our best and hopefully it won't be too long before we're all together at home.

Need I say more about Mr. JD?

At least he'll never lose it!

Hope this works...

Here's my attempt at posting video's...

Cole's First Bottle Feed



JD's First Bottle Feed

It's a BIG day!

What a milestone! The boys both took their bottles like champs today! It was like they had been taking bottles forever. Both of them knew just what to do and they did great. Cole had about 10 cc's and JD had 11 cc's. That is just about a 3rd of an ounce which doesn't sound like much but for them, it's a lot. They are going to have two bottle feeds per day for the next day or two and assuming that they do well with them, they will increase accordingly. They will have their feeding tubes to supplement until they get a little better at it, then they will pull their tubes out and see how they do. We are so proud of them. Here are a few pictures. I took video of both of them as well - if I can figure out how to load video, I will add them as well.

It's a banner day on their 7 Week birthday!!!

Cole's First Bottle



JD's First Bottle



Cole Sleeping with a full belly!



JD Sleeping with a full belly!

Overwhelmed with Gratitude

Just a quick post for those of you who might check the blog tonight. The boys are doing well today - not much new to report. Still thinking we might try bottles tomorrow but won't know for sure until morning. They are holding steady on weight as of last night so hoping for a small gain tonight!

What a day today. It's been so emotional and I am overwhelmed at the generosity and love that so many people gave today. I truly am. Those of you who were at my shower, it was an amazing day and it far exceeded what I would have ever dreamed for my baby shower. To the gracious hosts and all of the helpers (I know who you are!), thanks for making me feel so special and for making everything so perfect. And for those of you who traveled from afar (the farthest is LA!), I will never forget that you were there and it means the world to me that you took the time away from your busy lives and family to come, especially on a Sunday. My only regret is that I didn't get to spend more time with each of you. It went much to quickly, as always. By the way, how good were those cookie favors? They are awesome - thank goodness I got all of the extras! Yummm!



The pile of gifts in my living room is like Mount Everest. I'm still debating the best way to tackle it and get everything put in it's place. What a FUN task! And one that we have waited so long for - and I can't wait to dig in. Rest assured, I told those two lucky little boys of the outpouring of love for them; and about all of the fun things that they have waiting for them here when they get to come home. They will never want for anything - they are so spoiled already.

Special Mom's out there, don't forget to light your candle tonight at 7pm. And if you forget at 7, any time will do. Just remember those little angels and know that you all are in my thoughts this evening.

Thank you from the bottom of my heart to all of our loved ones, friends and family. What a special group of people you are. This is truly a day I will never, ever forget!

Message from JD & Cole

Hello, JD & Cole here. Just a quick update for all of you "Licameli Boy fans". We're trying our best to get out of here as soon as possible. We hear that our beds are all ready at home and we're anxious to get there.

Hate to brag too much but we're getting pretty hefty these days. I, Cole, am a bit over THREE pounds now! And my LITTLE brother JD (I was born 10 seconds before him so I am actually oldest) just turned FOUR pounds last night. So, as you can see, I'm a bit behind him weight wise but don't worry, I'll catch up.

Rumor has it that we're going to get to start "nippling" this weekend. Hmmm, sounds interesting huh? So, we'll see if we've come far enough by Sunday to try a bottle. Mommy really would like for them to wait on that since she has her baby shower on Sunday and she really wants to be here for that. We're sure she just wants to take more pictures - as if she hasn't taken enough! That flash kills our eyes - and she wonders why half of the photos have our eyes shut? Go figure.

We got to read books today with Mommy for a while. We love books. We read the big brown bear book about 10 times today. We think Mommy needs to bring in a new book for us!

I, JD, got my NJ tube out today and they replaced it with a tube into my belly. Thank goodness! Now, I just have to figure out how to stop refluxing when that food goes directly into my belly again. They told me before that I just needed to grow a little more and my reflux would get better. We'll see if they were right won't we!

That's about it for today. We're pooped so we better go sleep some more. Until tomorrow...oh, and by the way, thanks for all of your gifts and fun toys that you've dropped at our parents over the last several months. We can't wait to get home and see everything - we've heard all about it!

Babies in Heaven

For some reason I've got writers block. Not that I'm a prolific writer, it's just that I don't think I have ever been at a loss for words. It's because I have so many emotions running through my head that I can't seem to put it all into words. Here goes.

It's a big weekend. For a few reasons.

The biggest reason is that my baby shower is Sunday. I've waited and imagined this day for a long time. And somehow now that it is here, I don't feel worthy. Two of my best girlfriends have poured their energy into making this the perfect day for me and my family; and it was planned a long time ago. The original date was going to be July 2 - and I was hospitalized at that time; so it was postponed indefinitely. All of that energy for not. Over the last few months, they have been so patient in waiting to determine with me when the most appropriate time would be. It was hard to accept that the boys were really here and might be coming home, and the shower might really happen. It was hard to believe that they were really mine. It's hard to explain that feeling because normally new Mom's would be dying to have their shower. After all that we went through, I was so scared to plan it again for fear that something would happen a second time. We finally decided on a date and it's here. WOW.

I can't help but think that I don't want anyone to be obligated to do any more for us than they have already done. Over the last several months, the outpouring of love, support, prayers and generosity have been overwhelming. And the fact that everyone is gathering this weekend on our behalf is just amazing; and we are so grateful. Not that friendship and support requires "re-payment" but I just can't imagine how I can ever show everyone how much I appreciate all of this hoopla. Especially my girls, Lauri and Denise for the patience and love that they have shown throughout this ordeal to make this one of the most special days of my life. I'm forever indebted.

The other reason that this weekend is big is because on the very same day as my baby shower, falls "Pregnancy & Infant Loss Remembrance Day". It's an official national holiday. What a celebration for C. & I, and our angels. It's the perfect day to honor my latest loss, Calvin, since he will be showered with gifts along with his brothers. I am happy that such a wonderful long awaited occasion of my baby shower falls on this day that could otherwise be laden with sadness. It's a day to celebrate all of our children, those who are here with us and those who went to heaven early. And I will be honored to spend the day together with you gals who are with me celebrating, and have also lost babies. It's amazing how many women lose babies along the way and we never even know about their losses.

There is a national push to recognize this special day so that awareness of Infant Loss is heightened and people realize how important it is to remember those little babies that have not stayed on earth.

www.october15th.com


Everyone is invited to light a candle on Sunday, 10/15/06 at 7:00 pm, in ALL time zones, ALL over the world. If everyone lights a candle at 7pm and keeps it burning for at least one hour, there will be a wave of light over the entire world on October 15th to honor this special day - Pregnancy & Infant Loss Remembrance Day".

I am looking forward to Sunday so much - it's going to be such a special day. Although I will be emotional, it's all healthy, healing emotion. And I cannot thank everyone enough for all that you have given to us; emotionally, spiritually & physically. Although this experience has been a long road for us, the blessings certainly outweigh the hardships. The blessings are endless and keep coming as the days go on. How did we ever get so lucky? Sunday will truly be a special occasion for me, and for many others. Let's make it a celebration for all of the babies we love so much - those that are here, and those that are watching from above.

From one week to six weeks...

One Week old!



Six Weeks Old!



These photos speak for themselves.

The boys are doing very well today - lots of sleeping and pooping! No changes today, which is a good thing. Bottle feeds are pushed to Sunday; hope I can be there for their first try at the bottle. That will be a kodak moment for sure. We are getting more time to hold the babies as they get older - they are much more tolerant of being stirred and they don't tire quite as easily.

The photo below is the front view from today's photo shoot. This was the first time we have been able to see them side by side like this. Any resemblance to each other? They have loved being in the same bed today ~ they certainly can sense each other's presence. They were very content and quiet all day long. The nurses were very impressed!

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