I'm IT!

I've been tagged by Lisa to post eight random facts about myself. ( I still don't know how to make her name a link...William and Margaret's Mom. http://monkeyhead1024.blogspot.com)

I have to post these rules before I give you the facts:

Each player starts with eight random facts/habits about themselves.
People who are tagged need to write their own blog (about their eight things) and post these rules.
At the end of your blog, you need to choose eight people to get tagged and list their names.

1.) The first time I hung out with Edwin one-on-one we watched movies at my house. It was love right away. He went away for a week for boxing the next day and we talked every day he was gone. When he came back we made it official and began a serious relationship from that point on.

2.) My paternal great grandparents came to America from Malta, a tiny island off the coast of Sicily. Their names are on the wall in Ellis Island in New York City. So I'm Maltese...cool.

3.) In eigth grade, my superlatives were biggest mouth and cutest sneeze. lol.

4.) I graduated in the top 10% of my class in college.

5.) I wiggle my toes unconsciously when I'm about to fall asleep or very relaxed.

6.) I can cross my legs like a pretzel and walk on my knees in that position.

7.) I could eat spaghetti every day of the week. But I only like certain sauce and I don't put much sauce on my spaghetti, but I do melt American cheese on it and sprinkle parmesian cheese on it....yum.

8.) I'm allergic to nickel, so jewlery I wear has to be nickel-free or I break out in a terrible rash.

I don't know 8 people to tag, so I'm kinda breaking the rules.

1.) Danielle
2.) Erika
3.) Nathali
4.) Aiden's Mommy
5.) Jill (Miracle boy)
6.) Steph (Guinn Triplets)

If you've already been tagged sorry. For the other 2 I couldn't think to tag, if you're reading this and haven't been tagged yet...consider yourself tagged! Make sure you tell me if you did it so I can read!

6 months adjusted age

Hello all.

It seems so crazy that 6 months ago we were just getting ready to come home from the NICU after 4 months of hell. These six months have flown by for me, and Serena and Edwin have changed sooo much.
They are very much into toys now and are truly little social butterflies.
Here is a little bit about them at 6 months adjusted age.

Serena


She probably has the best disposition of any baby I have ever encountered. She is so mellow and soooo happy. She smiles at the slighest smirk from anyone, is brought to huge grins by toys, and is content to quietly observe while her brother cries until he is picked up or smiled at. Serena's fine motor and gross motor skills are taking off. She is a pro at tummy time and rolling from belly to back. She picks up toys, grabs at hanging toys, and tries to wriggle closer to toys just out of her reach. Everything goes into her mouth for exploration purposes. Serena is a GREAT sleeper. She can go down at 7:30 and not awake until 6 for some breakfast and then is back to sleep until 8:30-9. She will then take another nap around 11. She rarely wakes up crying, but rather opens her beautiful almond shaped eyes, entertains herself while someone prepares her milk, and then gives them the hugest grin when they appear at her crib. The only time Serena cries is if she is hungry or if she is over tired and needs someone to hold her and give her her pacifier until she falls completely asleep, which of course none of us mind doing since she is just so cuddly. She is a thumb sucker/fingers/whole hand sucker, and sometimes gags herself by sticking all of her fingers in her mouth at once. Silly girl. She is such a joy and she really makes me happy just by looking at her.

Edwin Jr.



Edwin is a Mommy's boy, and really very fond of anyone who enjoys holding him and talking to him. He is extremely social and wants the attention. He loves when anyone talks and smiles at him, and does a great job going back and forth in "conversation." I swear he says "hi" although obviously he has no idea what he is saying. He mimics sounds though, and has said "hi" countless times after we say hi to him. Edwin is doing much better with head control and tummy time. He still isn't nearly as strong as Serena, but is still O2 dependent, so that could account for some of it. He has also just figured out how to get his arm unstuck and make it from back to tummy. Edwin's sleep is sometimes disrupted, and he usually needs a comforting pat on his back, his pacifier, or a few sucks from a bottle, and then settles again. He is still a good sleeper though, and can sometimes make it all night without much fuss; especially if he is sleeping in his basinette next to our bed, which is where he and Serena sleep when there is no overnight nurse because it is easier to replace a cannula that has been pulled or rubbed out. Edwin also loves to smile, and does this extremely cute smile/opened mouth grin whenever he sees Mommy (see above picture.) Of course he melts my heart as well, and the sight of Champ makes me so very happy. I think soon I will make the transition to calling him EJ. Of course Champ is his nickname for family, but I figure for school purposes, etc EJ is more appropriate. Having 2 Edwins in the house is just too confusing!

I can't believe in a few short months we will be celebrating S & E's first actual birthday. Every day I see their gorgeous faces I am reminded how very lucky we are, and how devoted we are to giving them all the love in the world.

Too tired for the intended post

I'm a little too tired to post a nice post about S & E at 6 months adjusted (happy 6 months adjusted though!) I'll do that tomorrow hopefully. But for now, I finally captured 2 smiles. They smile sooo much but won't usually do it once the camera comes out. They focus in on the red light and then the flash and get distracted. But here are my beauties how I see them 95% of the day!

See, actually we love each other

Okay, so after the pics of Serena "playing" with Champ causing him to cry, I figured I should take some pics of the two playing nicely and enjoying themselves. Serena really loves Champ sooo much. She may even be a little more fond of him than he is of her now. He still loves his Mumma the most!
Note Champ's orange tinge to his cannula, a result of carrot baby food...yum...he loved it, ate almost the entire jar! Didn't go so well for Beana girl.
As for their tummy time, both are doing great! They have also mastered rolling from back to tummy! Edwin's arm sometimes gets caught, but he did it ALL by himself yesterday! Serena has been doin git for over a week and flips around with ease. So fun! Whoa just turned back around to see them playing on the floor and Edwin's on his belly holding his head up looking around. Last I left him he was on his back! :)

Pulmonology and interesting nasal cannula comments from strangers

Hello...
We had a pulmonology appointment today. Weights: Serena 13 lbs 7.8 oz and Champ 14 lbs 4.2 ounces! Serena was 24 3/4 inches long, and Champ was 25 1/2. Serena will begin spending nap time off O2 in a week or 2 after her cold completely clears, and we will call in 2 weeks about a slow wean for Champ, since by then his cold should be all gone as well. He'll be going down by 50ccs every 2 weeks or once a month depending on how he tolerates it. We will also do an EKG at our next appointment, which will be in 2 months.
After pulmonology we went to the NICU for a visit. We were so happy to see everyone, and I think they were pretty happy to see us as well.
Everyone commented on how cute, handsome, and beautiful they are, and also how well they are doing. Of course they were so social and happy, which makes everyone feel so special. Even though things are still so unknown, I know Serena and Edwin are doing so well now, and they are sooooo happy, which makes me the happiest Mom in the world.
What's so special to me is that both know Mommy by sight and voice. They really favor me over other people, and I just love that. I guess not being able to take them home right away, and not knowing if they "bonded" with me the short time they were inside me, I always worried they wouldn't know Mommy. But they most certainly do, and the smiles that come across their face when I smile or hold them melts my heart. There is not better feeling than the love between us (including Daddy, Grammy, and ALL of our family.) I just love Serena and Edwin sooo much; I will never be able to put it in words.
After the NICU we went to the grocery store (p.s. Edwin is in Canada sparring and my Mom has been helping out A LOT like usual, so it was her and I today at the appoint, NICU and store.) So we went to the seafood part and a guy leans over the counter and says "What's in their nose?" My mom quickly responded "Oh it's just oxygen." He then said "That's BAD. I've never seen a baby that has oxygen."
I guess I just never understand why people feel the need to be so blunt about asking about their cannulas. Do you know how many times people have said "What's that?" or, the always appropriate, "What's wrong with them?" I guess I can think of a lot more sensitive things to say, and even though it shouldn't, it kind of makes me mad that people focus in on the cannula right away. I guess I have to remind myself that I am so used to seeing it, but to others it may look alarming. But it really isn't anyone's business, yet everyone seems to ask. I love sharing Edwin and Serena's story with people, but I have to admit I tend to open up more to people who are a little more sensitive about how they ask what the nasal cannula is for. The comment that caught me the most off guard occured in Maine. A man working in Best Buy, and was soo nice and offered to get us a cart, said in the most serious voice, "Oh, so are they alergic to the air?" I almost burst out laughing. Thankfully my sister was there to be explain it was just oxygen to help them breathe.
Please feel free to share your interesting comments related to your child's medical equipment. I'm sure everyone has a few...
As for photos, I am awaiting some pictures from Danille, Sammy's Mommy. Last Sat we went to his 1st B-Day party and had a blast. He is such an adorablelittle boy, and he is a miracle baby as well. I hope Danielle emails me the pics and that you check out Sammy's page as well (on my links.) For now, here are my sweeties sleeping after a busy day.

High chair time and Serena beats up her brother...EDITED

We finally have begun putting Serena and Edwin in their high chairs and have revisited the rice cereal and baby foods as of yesterday.
Champ still does better than Beana, in that he actually knows what to do with the food right away, whereas my baby girl tends to make a face of disgust and confusion, and then procedes to swallow.
Is it me, or are they getting cuter by the day?




I couldn't wait to make a new post, so I had to post these since I just uploaded them...Look at what Serena is doing to Champ!

WHOOPS!!! Don't show anyone from the development team!

Hey, these pics go against everything we have been told by the development team...absolutely NO exercausers! I guess they are even worse, they are technically walkers...but there was no walking involved at all. We wanted to see what S and E would do in terms of their fine motor skills...i.e. reaching for the toys. They were in them all of 10 minutes...here are some cute photos of the first and probably very few times they will get to try them out.

We're home from the hospital

Hello everyone...

So, in spite of their colds, Serena and Edwin both had their bronchoscopies on Monday morning. Everything went well, and even though I was quite worried that Edwin would have difficulty coming off the vent, he did fine.
Both took quite awhile to wake up post-procedure, but when they did they were able to oxygenate well at an increased amount of O2. In fact, Edwin is still on 1 liter and Serena is on 1/4 liter, and we are keeping her on O2 during the day. Both will remain on the higher amount of O2 until next week just to help support them after the "trauma" of being under anethesia.
We have a pulmonology appointment next week, and hopefully they will be ready to go back to their normal amounts of O2.
They have been very tired and not really themselves, although today they have been a little more back to their happy, playful, energetic selves. I think in a couple more days they will feel stronger.
So as for the results. Edwin's ariway is completely normal. We are awaiting the results of the biopsy because they also scoped his tummy. With his history of reflux they wanted to check things out there as well.
As expected, Serena's left vocal cord is paralyzed, probably a result of her PDA ligation. She also has two places in which her airway is narrowed. The ENT referred to it as tracheal malasia. This explains why Serena arches her head back while asleep...she is keeping her airway open in order to breathe.
We are very fortunate that Serena is breathing so well without O2, and that she doesn't have a trach. The ENT hopes that nature will heal her vocal cord and airway, so we are giving her 6 months, and will repeat a bronch at that time.
Hopefully, things will heal on their own, and if not we have one of the best ENTs in the world and he specializes in pedicatric voice and pediatric airway...lucky us. So I have faith everything will be fine with Serena.
Both Serena and Edwin also had tubes placed in their ears due to fluid presence, and both failed their ABRs while under anethesia. We have to have an audiology appointment to see what's up with that. Considering Edwin passed his in the NICU and Serena referred in the left ear and passed in the right in the NICU (results were the opposite in this ABR), I think the results are not accurate. The ENT said this was a possibilty especially because the tubes were just placed. I am pretty sure they can hear due to the many instances of them awaking from noises such as the phone ringing and each other's cries. We will follow up with the audiologist here in Worcester for a repeat ABR for both...fun. I'm sure they won't stay asleep for it, but let's hope I'm wrong.
We spent the night just to be sure they were okay, and got to go home first thing Tuesday morning. Of course I am still trying to recover for almost no sleep in over 24 hours, but thankfully we had a nurse last night and I slept great.
So now we have a few more appointments this month including pulmonology, the opthamologist, NICU follow-up clinic, and now audiology.
As always, we'll keep you updated!

Pictures to post tomorrow...I didn't take any in the hospital but I have some cute ones from the weekend and today.

4th of July and our first colds

Hi there...

So, for the past week Serena and Edwin have been battling their very first colds. It has not been as scary an experience as I thought, but it isn't very fun either.

I took them to the pulmonologist last Friday, (this is where I call whenever they have an issue that affects their respiratory status...we have sick visits there as opposed to the pedi for now). They just told me to give them neb treatments 2-3 times a day...morning, afternoon if needed, and night. It seems to be helping.
Serena has a cough where it sounds like "yucky" is caught in her throat and with her paralized vocal cord, I think it makes it tough for her to clear it out. Thankfully, as of today she seems a lot better.
Champ is congested, has green boogies in his nose, and has a pretty nasty cough...that too sounds better today.
Both have required a boost in O2 while asleep...Serena now needs 200ccs while asleep, and 500ccs for Edwin.
Bad news, is we scheduled their bronchoscopies for Monday waaaaay back in the winter, because mid-summer=no sickness right? wrong.
I have been getting varying opinions on whether or not to cancel, and because of the holiday week, the actual ENT Dr will not be in until Monday and their appointment is at 7am, meaning we have to be in Boston at 6am, meaning we have no time to talk to him about it and see what he thinks before making the drive in.
I think I will bring them and see if he wants to go through with it.
The past couple of days Champ has been vomitting...sometimes in his sleep. I think it's post-nasal drip causing him to projectile vomit, and last night he puked up a bunch of mucus after he cleaned out his system of the formula he had eaten. Gross I know. If he continues doing that, I may wait on his but still do Serena's...we'll have to see. I pray they get better so they can get those bronchs done, but whatever is best. It's scary enough to think they will be intubated...uuuggghhh.....

In happier news....the 4th of July was fun. We went to my Mom's house and had a good time. As you can see by the photos, Champ and Beana had so much fun looking at my Moms beautiful flowers. They also played/cried all day, and didn't seem to want to nap, (the one photo I have of them sleeping was the one time they fell alseep, and it wasn't for long.) Thankfully, they slept through the night that night. I guess they were too excited to be at Grammy's and Grandpa's and didn't want to nap through the excitement!

So I will keep you updated about their bronchs. If they do the procedure we will be there overnight, so I may not get to post until Tuesday or Wednesday.

For now, enjoy the cuteness.....











And finally a nice picture of Mommy and Daddy