Adelina's Blog

MOVING OUT!!

2011-12-08T10:13:00.000-08:00

For anyone still checking in here.... I tried to keep annual posts since our NICU days... but we've moved on to more 'big kid' ideas. Come grow along with us!!

WWW.nicdnotbroken.blogspot.com

Whoa... it's been a year????

2011-03-31T13:32:00.000-07:00

I just logged on and realized that it's been a whole year.... we've done a lot in that time!

We've moved back to Bucks County and Adelina and Gianna are both in preschool right down the street from where we live. AND we've added another family member to the mix! Franca was born on February 19th weighing in at 8lbs 12oz after another long and horror filled pregnancy. We also said goodbye to a furry family member, Jackson, who we miss dearly and to my Grandmother... Franca was born on her birthday which was very bittersweet.

So we are officially a family of many and trying to keep it all together. We try our best to keep smiling even when times are tough - the ball keeps on rolling and we don't want to get squashed like bug ;)

Having 4 kids ages 5 and under is tough enough as it is, but this year the birthdays hit us hard. Gianna really started to seem like a "big kid", there was a new baby blowing out candles again, it was strange to watch Vincent and Sofia grow up thru Adelina's every move and not have my Grandmother there with us just seemed like a lot to munch on.

So cheers to another year....hopefully we will have settled into our final home by next year and since we are FINALLY finished having children, we will be getting on with this thing called life.

Happy Birthday and Remembering

2010-03-18T15:08:00.000-07:00

Happy 3rd & 4th Birthday to my AMAZING DAUGHTERS, Adelina & Gianna!!!!!

Always in our hearts, Happy Birthday Vinny & Sofia.... remembering you and know you are watching over all of us xoxo

2009-12-15T12:33:00.001-08:00

Merry Christmas and Happy Holidays To All!

As of December 2009, we are all doing much better and hoping that 2010 is our year. With all of the donations to our Foundation, a bereavement room for parents is under construction at Abington Memorial Hospital. We are very grateful for the support of everyone in our lives and for being given a chance to make a difference for others who suffer misfortune.

Adelina is finally starting to make it out of the darkness ... almost 3 years later with hospitals and therapists ... her hearing has finally been restored, she is growing at a normal rate and developing into a wonderful young lady... ok, she has some behavioral issues, but it's Christmas!

Gianna is continuing help at St. Christopher's Hospital and we are finally finished with diagnostic testing!! We told her as of yesterday's MRI that we're done. She was happy.

Lucia is going strong and you would think that she's 2 years old already. What a wonderful thing a full term baby can be!

Another Year Gone

2009-03-11T19:07:00.000-07:00

We wanted to give a shout to our Lovely Ladies for their birthdays:

Happy 1st Birthday Lucia Sofia
Happy 2nd Birthday Adelina J, Sofia Rosa & Vincent Dominic
Happy 3rd Birthday Gianna Marie

xoxo Mom & Dad

You continue to challenge us and amaze us. Thank you.

Birthday Time!

2008-03-12T05:41:00.000-07:00

We only have a few more weeks of quarantine, so we'll be OFFICIALLY signing off after this post. We will be posting little updates on her doctor visits on the Foundation's web site http://www.sr-vdcmemorial.com/ if anyone wants to check in. There will also be information about the March of Dimes walk on 4/27 and the upcoming Golf Outing in September.

Thank you all for checking in on us and for allowing us to be "seen" as we haven't seen much of anything or anyone over these past 5-6 months.

We put this together a while ago, so if you have some time check it out. Just click the play button below to see the video - thanks Foxes for the idea (we stole) instead of the project of photos I was uploading! I lost so many photos and videos when my computer crashed, but the video is still long (7 minutes total)!

We have been through a lot over the past year and it was nice to reflect on how far we've all come and how much Adelina has been growing and fighting. Happy Birthday to Gianna Marie, Adelina J., Sofia Rosa & Vincent Dominic.

Photo and video editing at www.OneTrueMedia.com

Quick Update

2008-02-27T16:21:00.001-08:00

Well our little person weighed in at 16 lbs 1 oz at her RSV weigh in station. She finally qualified for the double leg injection - ouch! She hasn't gained much weight this past month, but she's eating a lot and we have to take into account the fact that she's sweating to the oldies constantly.

We've given her the boot from the baby food and she's mashing away with a toothless mouth on whatever it is big sis is having for dinner. We have to limit her intake of acidy foods, but she likes to eat pretty much everything we've offered her... and we totally psyched because she hasn't had many reactions allergy-wise and we're tracking the ones that set her off.

Still on the move with something to prove -

Gianna showed her how to go up the stairs this morning and off she went to the tune of "Go Sissy GO" and laughter. "Up the stairs" here is 16 steps with a landing! Go Bean!!! She's also trying to free stand and go between our couch and ottoman with a step. If she starts walking, I think she might qualify for some super baby award.

PS - Baby to Be Calvanese weighed almost 3lbs during our last ultrasound... it took Adelina months to get there after she was born. I'll be 30 weeks on Saturday - yeah me!

Happy V-Day!

2008-02-13T16:45:00.000-08:00

Adelina and Gianna were hard at work making Da-da Valentine cards... the crayons tasted just right and somehow I ended up doing all the work! Gianna did draw some beautiful artwork for Vince despite the wet crayons.

It was about 7am when this picture was taken... Gianna demanded that sneakers be worn for arts and crafts. Adelina just likes to eat crayons.

For whatever reason - the blog is not allowing my camera video to be uploaded, so until I can figure that out... we'll keep it old school with the photos.

We tried to be a normal family and go to a bookstore for 20 mintues to get some new books for the girls... that's all it took to put our entire family out of commission for a week with the stomach virus, so we're back in hiding again. This marks the second year where Gianna gave it to me and put me in the hospital. We even sent Adelina to another cave and she still got it by the end of the week (and gave it to Granny!).

Prior to that we had a few "blue" episodes with Adelina, but she's doing much better and we're going to speed up the scope and had to put her back on one of her medications. We have about a month until her birthday, but we're hoping they make an exception and we can go out-patient!

Other than all of that... everyone is doing well and we're just waiting to see when we can schedule the scope and waiting to see how long new baby can take it in here!

I take poor Gianna outside as much as possible when Adelina is sleeping - she's starting to get stir crazy as we all are. She loved finally getting to wear the snow suit - puffy purple baby! Come on cold weather - kill those germs!

The Amazing Bean

2008-01-27T11:45:00.000-08:00

Adelina goes by many nicknames, but we have been calling her "Bean" since the day she was born. She's always moving and jumping like a jumping bean since the belly days... and she hasn't stopped.

I went to go snap her picture the other day as she was sitting and looking out the window - I returned with the camera and she was standing and cruising along the glass like a pro. The kid is 15lbs and 25inches long - every day she amazes me more and more.

She's now imitating sounds, crawling like a pro, cruising and EATING like a pig. Bean is picking things up with her pincer grasp and looking for lost objects... She's trying to catch up to big sis and dying for her attention. We're so proud that our girl, a little over a month ago losing weight and miserable, is fighting so hard once again.

On the medical front -

The nurses/doc were clapping when we put Adelina back on the scale for a re-check (they thought it was a mistake). She is 15lbs 10oz - we're doing it!!!! The medication is working and that brought her down from code red to a more manageable orange. We are almost certain that she has EE, which is not great news, but the medication will buy us until her birthday so can just be an outpatient!! The scope will be set for April and then we'll get a better idea from GI and the allergist what to do for nutrition. If necessary, they will take care of the inflammation while they're in there with the scope. We were even able to strip one medication out of her regimen!!!

So for now - she's growing and keeping her diet limited to be safe. She'll be 1 soon and we have to start getting nutrition to the next step and figure a way to function with the least amount of medications as possible. Next month we only have to take her for an RSV shot (like a "normal" kid!). Hope there are enough photos here until another post...

This gives us a chance to breathe with the unknown factor of the baby on the way... I'm feeling ok, but going almost weekly at this point and receiving steroid injections (for baby's lungs) and progesterone (to help keep him/her in there as long as possible). Although the cerclage has helped us make it this far (25 weeks - same as Adelina), it is shortening quickly... I only have 1/2cm to go before we're at the cervical length limit.

Not to forget toddler mania - Gianna is really starting to grow hair (nice), talk in small sentences and has started running (and trying to jump). She also loves to say "no sis" when Adelina tries to take her toys... we're working on the sharing thing.

Here's baby??? Looking good!!

Hear Ye, Hear Ye

2008-01-13T10:21:00.001-08:00

Adelina went to her behavioral hearing screen this week (at CHOP in King of Prussia - only 10 minutes away for once!). There were 3 tests - two with probes checking for different brain waves and one in an actual sound booth where she was to respond to different types and levels of sounds/voices.

The two probe tests showed she could hear perfect out of the left ear, but she failed the right on both. We're going back in a few more weeks to re-test in case there was some congestion getting in the way. She was not able to hear the frequencies correctly, but she's been a little stuffy from the reflux still!

The sound booth was pretty hilarious... she was supposed to "sit still" on my lap for about 10 minutes. She was also supposed to be "quiet" - the two things that Adelina never does.

As soon as the light up dog in the corner went off, she was in full on conversation and we couldn't finish the low frequency portions.

The feedings are going o.k. and we're still on full medications of priolsec, zantac, erithromycin and albuterol. That's a lot of medication for someone who doesn't eat very much! Here's a picture of Vince during one of the wonderful feeding experiences we have... we've decided to go the humor route at this point. Imagine non-stop leg kicking and arm swinging... and gagging and Dad just smiling away.

On a side note - we want to thank everyone for their donations to the Sofia & Vincent Memorial Foundation last year. We received a letter from Abington naming the Foundation to the AMH Chairman's Board and a plaque with their names is forever in the Hall of Fame display outside the Shorday Atrium. We will also be naming a room after the babies somewhere in the NICU in the next few months.

As we likely will be visiting the NICU again this year with baby #5, we are very comforted by having Sofie & Vincents' presence there as well as all of the doctors and nurses who have cared for all four of our children. We're also blessed to have such support from friends and family or we wouldn't be able to do it all again!!

Something Is Working!

2008-01-05T08:17:00.000-08:00

So the switch to the new formula ($165 for a case of 4 cans that last maybe 10 days) didn't go so well... Adelina was still giving about half of it back to our floors and clothes. The next step was to start her slowly on the EES medicine (Erythromycin) and we saw immediate results!! For the first time she wasn't getting sick! We're keeping her on the new formula just to be safe since it is already pre-digested.

Of course a few of the side effects were working against her - diarrhea, loss of appetite, cramping, etc - so we're glad that we took our time building her up to a full dose. Mealtime is still a struggle, but she's doing better and hopefull will put some weight back on. There was no weight gain to report for the month of December :P We're still at 14lbs with no teeth and/or hair!

Her follow-up is scheduled for the 22nd of this month with GI, so we'll figure out where to go from here. The kid can't live on a constant flow of antibiotics! We're hoping for NO TUBE and a better solution...

She also goes next week for a behavioral hearing test - maybe this time she'll know her name???

On a funny note - I went to check on our little sweety (she was supposed to be asleep in her swing), because I heard some noise. I walked in the room to find an empty swing... she managed to wiggle out of the straps and lean forward enough to reach the floor. She must have rolled and crawled her way to the window - I think she has cabin fever more than any of us!

Merry Christmas and Happy New Year!!

2007-12-25T14:11:00.000-08:00

We had quite the year and it was nice to have a "quiet" Christmas... Adelina has been pretty fussy and spitting up/vomiting on her new formula more than ever before. We are to start the medication next week and hope that it helps put an end to this for her.

We have decided to go ahead with the scope and hospitalization in lieu of putting a tube in her to bypass the stomach (J Tube). We're not sure what this is going to show us anyway, but she's been through enough with the tubes and wires for now... and frankly, so have we.

So hopefully in the new year, we will have a better and clearer picture of her overall health. We will be off to the pulmonolgist after she finishes up this GI nightmare. RSV season is over (for Adelina) in March/April, so COME ON SPRING!!!

Thank you to everyone for their kind words and thoughts over the holidays - and for knowing that we aren't able to spend them with anyone besides immediate family. We're hoping for a healthy and happy 2008 with another added member (that is hopefully FULL TERM and HEALTHY) and more sane parents.

Great Choices

2007-12-17T16:30:00.000-08:00

GI has given us a couple options and we're hoping to not have to pick one...

She's now on the final prescription formula and a round of antibiotics to try and eliminate any inflammation she may still have in GI tract. If she is still getting sick after that (2 weeks time), the we have the option to:

Go with the feeding tube (NG tube) :P with the broken down formula so she can't reflux it and wait until her birthday to get scoped. Babies over 1 year can do the scoping as an outpatient in most cases, but under 1 year is quite the stay

Get scoped now and stay at CHOP for an observation period and go from there - even though tube feed might be the answer anyway!

So come on Adelina - keep the milk down and get it together woman. We're all afraid of her damaging her throat and congesting her sinus cavity to the point where she's working too hard to breathe. The other big fear GI has is a repeat in the episode we had back in June... don't think we want to go there again.

We had similar issues with Gianna - and still are - with the reflux, but the difference is that Gianna did not have lung disease. Adelina's lungs are taking a hit from the congestion and since we're in RSV season and she already has BPD, we have to take every precaution to protect her. She's growing which is a good thing - up to almost 14 lbs now!

Nina Fox (Adelina's NICU pal) and Adelina during a supervised RSV quaratined play date! Adelina is either trying hard not to get sick on Nina OR Nina just made her punch herself in the face...

Yes, that is a barf on her shoulder and outfit #5 from that day in particular. Dreft is making a fortune off of our family.

9 Month Check Up

2007-12-13T13:48:00.000-08:00

Can you believe we're at the 9 month mark???

The skinny on the visit:

lungs sound clear (good news), so congestion is all upper airway from the reflux

the congestion is making her work hard to breathe, so we'll be seeing GI on Monday for a schedule to re-work the GI studies and we'll go from there

To be sure about the lungs since, we're also to see the pulmonologist asap. A lot of her quirks mean that she's protecting her airway, so we just have to make sure with an xray, etc that they are indeed clear.

Neo-natal follow up on Tuesday

She's 13lbs 12oz and 25 inches long, hit all the adjusted milestones and then some...

Go Adelina! You should have seen the doctor's face when he saw her crawl backwards. I think it even freaked him out - she's Super Preemie!!!

The Buzz on GI

2007-11-29T17:07:00.000-08:00

Let's start with the good stuff:

Our little Miss weighed in at 13lbs 7oz and was 25 inches long. So she's now doubled her length since birth!!! She still looks like a 2 month old, but she's like a TMX 2 month old... she rolls over, laughs, sits up (as of tonight) and now rocks back and forth on all fours. It really looks like a movie stunt...

I have to take her clothes/diaper off so she can sit up... the diaper makes her reflux badly when sitting up, so 'no' we don't let our kids hang out in the nude just because we're quarantined! She still puked 3 times on Gianna's floor (sorry G, but you're moving rooms soon anyway).

Onto the other news: The reflux has become a major problem and we're working on the last resort attempts to remedy it. I've made the recommended changes and she actually seems worse - poor appetite to add to the already gagging, coughing, choking... good news is that she is trying to protect her airways, bad news is that it's still going down the wrong pipe.

GI wants to see her back in three weeks and then we'll see the neonatologist at CHOP as well to determine what is the next step. She's already had an upper/lower GI, a pneumogram 24 hour study, barium swallow and milk scan... what could be left!!??? I guess we'll find out, eh!

She's also showing signs of some sort of allergy... may be the soy, may be seasonal or something else??? Her eyes are a bit swollen and watery - Gianna had the same thing, so we're assuming it's the soy protein and the milk protein allergy! Nice work girls!!

I'll keep everyone posted and I apologize if I'm not returning emails fast enough as I don't get much computer time since I have to use Vince's computer until mine is fixed. I know who all you closet bloggers are, so feel free to post!

November Is Over Already?

2007-11-24T10:48:00.001-08:00

November went pretty quickly over here and we can't believe this year is almost over... actually, we hoping to leave it behind us and get thru next year with what looks to be preemie Calvanese #5 on the way.

My computer crashed and it looks like I lost quite a few recent photos as well as everything I had!!! Regardless, here are some recent pictures and a family update:

Adelina is growing strong... she is still struggling with her lungs and reflux, so we're still avoiding public places and people with or around children (we call her "Bin Lina). She's still on a lot of medicine and the inhaler, but we're hoping to see if there is something better. We are visiting GI again next week and then towards the end of the month will go for her neo-natal follow up at Children's Hospital to see how she is catching up and if she'll need another form of help with her breathing. In the meanwhile, we'll be taking her for a 9 month (Can You Believe It??) check up and another RSV shot. We have no clue how much she weighs right now, but we can tell she's growing into her clothes.

She's all over the road kicking and grabbing and trying to keep up with big sis, Gianna. She's finally drinking enough formula and her meal time is getting better. She's happy to know that she is going to be a big sister in the spring and that this is the last set of holidays where she won't be eating turkey! We spent them alone to be safe, but cooked as if everyone was coming over!!! We're hoping to grow some hair, but it took almost until now for Gianna to get some so I guess the hair bows will wait too.

Happy Halloween!

2007-11-01T05:18:00.000-07:00

Adelina was so excited to dress up that she wore her costume for a total of 10 minutes! She also went to bed early and missed out on trick or treating, but Gianna burned the midnight oil as she hit the pavement in search of the Great Pumpkin. I think her father ate most of her candy though...

Gianna wasn't too happy about wearing the head piece, so she walked around as a half dog / half girl, which is about close to what we think she is anyway. She could have cared less about candy, but if someone had a dog at the front door...

Adelina closed out this month at around 12 lbs and about 22 1/2 inches long. She's finally up to date on her vaccines as we had to give her one every two weeks - she gets very sick from pretty much anything and then has trouble breathing. We've started her monthly shots for RSV and we'll keep her hiding in an underground cave until further notice. She's due next month for a trip back to the GI doctor at Children's and she'll finally start eating cereal & veggies like a big kid. She's started laughing, passing things from hand to hand and is practicing sitting up as much as we can w/0 her throwing up from pressure on her stomach.

For Anyone Still Checking...

2007-10-10T16:20:00.000-07:00

Adelina did well at her neo-natal follow up at CHOP this month. She weighed 11lbs 6oz and was 22in long - 50% on the preemie chart! She had to be put on another medication for reflux since she is maxed out on a dose of her existing medication and still having problems. Her lungs are also an issue as she has re-developed chronic lung disease. We have her on an inhaler for now and hoping that's all we have to use every day. She had to have her shots spaced out because the flu shot made her very ill... next is her first round of RSV. She'll get one a month until the season (Nov - April) is over. We are supposed to keep her on a short leash due to the issues she's having now with the wheezing, coughing and shallow breathing. So - See you all in the Spring!!

Otherwise, she is rolling over all over the place, smiling constantly, sleeping 12 hours at night and eating (finally) well for us. She's able to bring her hands together and push up when she's on her belly. Big sister Gianna is in love with "sheesh" or "sis."

Signing Off (Again)

2007-06-26T08:05:00.001-07:00

Maverick and Goose meet again...

Watching some Baby Einstein videos with Da Da

Gianna playing the spoon...

and Adelina sleeping through it all....

This is our last post unless of course we have another event needing posts - Let's hope not!!! We are thanking everyone again for checking in on us and Adelina hopes to meet everyone soon. She'll be on sabbaticle during RSV season.

For those who have not been contacted about the First Annual Sofia & Vincent Memorial Golf Outing... The event will be held Monday, August 13th at Makefields Highlands Golf Club.

We are having a few hole contests, a beer cart, 50/50, and dinner afterwards. Please contact Vince at vcalvanese@hotmail.com for more details on foursome information, sponsoring a hole or attending the dinner afterwards (open to all). We have set up a charity in our children's names with profits going to Abington Memorial NICU, Children's Hospital of Philadelphia and the March of Dimes. This is our way of lighting a candle for our little ones every year and a tax deduction for all of you (who's the accountant?).

Some Pics

2007-06-23T07:58:00.000-07:00

Adelina in her CHOP uniform and IV arm.

Here she's explaining to us that she has a reflux problem. The upper GI showed no signs of intestinal problems, but medication will help keep the cynotic episodes away (and keep Mommy's hair brown).

Dad coming from work to visit... Adelina wasn't sure who the guy in the fancy suit and tie was at first and Daddy wasn't sure it was Adelina with her EEG hair-do. She looked like Grandpa Munster, but cuter.

Mom deserves a kiss... thanks Addy :)

She knew what was coming next here.... HOME!!!!!!!!!

Third Time's A Charm

2007-06-22T10:41:00.000-07:00

Adelina's Upper GI went well this morning and all is functioning normally, so they were able to start her on some medicine to help empty her stomach more quickly. This will help with her reflux issues and belly distention.

She in the middle of a repeat car seat test, so I'll be taking her home this afternoon (again). This puts her at three hospital stays (85 days in all) and enough for one life time if you ask me. She's coming home on increased prilosec as well to make sure we don't have to come here again.

I'm sure the babysitters are just lined up now... right?

Thanks to everyone for the phone calls, emails and posts. It really does keep me going some days! Adelina - you are aging Mommy beyond my years, but I love ya. I'll post some of her pictures when we get home :)

Welcome Home Again Little Lady - Now STAY THERE.

We were hoping this was the last chapter in this saga , but it's really the first chapter in a very exciting story. All that other nonsense was just preface.

A shout out to Nina Fox who also made it home this week ~ You've come a long long way Baby.

"But this one goes to 11"

2007-06-21T08:30:00.000-07:00

So far Adelina's spinal tap (see title for spinal tap fans) came back normal for her blood count and blood work was also ok. She's receiving 2 types of antibiotics over a 48 hour period in case she has an infection. We're waiting on an EEG and a download of her monitor information to see if that helps figure out what happened yesterday. I'm staying out of the way during rounds in the lounge... This place is incredible, but the fact that all of the doctors look to be my age is pretty funny.

We think that the "seizure" she had was due to reflux issues which medications should help (actually an increase of what she has). If the EEG does not come back normal, an MRI will follow and a detailed look at the hemangiomen on her neck.

Adelina has been through a lot in her short little life and to think of what could have happened after all of this.... please just take a look at these:

Infant CPR
http://depts.washington.edu/learncpr/infantcpr.html

Children 1-8
http://depts.washington.edu/learncpr/childrencpr.html

CHOP CHOP

2007-06-20T17:46:00.000-07:00

I am actually typing this from the high tech waiting room at CHOP... Addy had a bit of an episode at home that required ER help. We're not sure how long she will be here, so keep our little one in your thoughts and prayers. Make sure if you have kids, you know CPR.

This place is amazing.

Thanks Marcy for bringing me something to eat and driving me home!

The Latest & Greatest

2007-06-18T09:31:00.000-07:00

Adelina turned 3 months old over Father's Day weekend and weighed in at 5lbs 1oz.

We were playing sharades... we're still not sure what she was trying to say here.

She had a follow up eye exam this morning with Doc Koller and all is still well with the exception of a little near sitedness that may disappear. We follow up again in a week! Her monitor has been going off quite often for "apnea" but it's really just shallow breathing and she recovers on her own.

Big Sis, Gianna, is adapting to life with a new baby with ease. She calls her "sis" and tries to share everything with her (this means putting her juice cup, toys, whatever in her bassinet).

Just a couple of gals hanging out... same double chin and chubby cheeks.

Adelina chillin out in her bouncy chair during some awake time.

Photo Shoot

2007-06-12T16:31:00.001-07:00

I finally had a lot of down time for some pictures... Adelina loves being home or at least we love her home!

She's been very easy so far and has only had a few episodes since her last visit back to the NICU (all self recovered). We are incident free for two days in a row, so hoping to keep it up and ditch the monitor and caffeine soon.

She's eating almost 3 oz every 4 hours - what a champ!

Mom and her chicks.

Gianna doing "nice nice" to baby sister Adelina. Good girl Gianna :)

Adelina on my lap during a wake period. She has about two times per day where she can stay awake for a few hours.

Adelina??? Trick Photo - That was Gianna. Pretty funny!

Adelina & Gianna with their biggest fan.

Take Two

2007-06-10T10:29:00.000-07:00

I was able to take Adelina home (again) on Saturday afternoon and things are going well at home. The visiting nurse came out to see her on Sunday morning and we'll visit the pediatrician this week! She weighed 4lbs 12oz on Sunday, so we're back on track to getting to 5lbs before her due date (6/29).

Her eyes were re-checked for ROP upon discharge and still no signs of problems. She's home with a monitor, caffeine, prilosec and multi-vitamins (and some gas drops :P). Only a couple little apnea incidents, but all self recovered. She'll grow out of it soon !!!

So 77 + 5 days total for us at the NICU. If you count my time in the MOM Unit, thats 105 days at Abington. That's enough for one lifetime, thanks. Welcome Back Adelina!

We'll post some family pics later on!

So life officially begins again here this week. She's officially hugging the floor in our family room. Let's hope we're finished with hospitals for a long time.

Triple Venti Latte

2007-06-08T13:45:00.000-07:00

Addy received part deux of her blood yesterday morning, but with a few episodes in between she earned her cup of joe. She is doing much better on the caffeine and her test results showed no infection. She still has her little periods of fast and slow breathing, but the monitor at home will help us figure out when it's too much for her and needs some help.

I was trained on the monitor and went over CPR again, so we feel confident bringing her home ASAP and hopefully this weekend. Get it together Addy! We did get to say goodbye to some of our favorite nurses who weren't working last week at discharge (they told us that we could have just called!). Adelina turns 3 months on the 16th!

Nurse Barb took good care of Adelina for readmission and kept Mom laughing! Thanks Barb - wish we had you during our first 2 1/2 months at least once!

Nurse Grace and her girlfriend Adelina. Grace is always giving us tips! - we love Grace.

Adelina gives nurse Ann Marie her "touch down" move to let her know she loves her too.

And nurse Rohjin (I'll go back and fix this spelling) took care of Addy when she was a little seedling.

Transfusion

2007-06-06T19:10:00.001-07:00

Adelina's pneumogram study was finished this morning and Doc Shrager said he was a little surprised with the results. Adelina wasn't showing signs of bad reflux, but of central apnea. There are three types of apnea: obstructive, central and mixed.

Central is when the part of the brain that controls breathing doesn't start or maintain the breathing process properly. It's pretty common in premature infants, because the respiratory center in the brain is immature!

So the results and her blood count yesterday showing signs of anemia earned her a blood transfusion tonight. She'll receive 30ml tonight and 20ml tomorrow with some lasixs for the extra fluids.

A repeat pneumogram will run on Friday to see if the blood is helping the apnea. She was having a lot of periods of shallow breathing tonight, so we are glad to see her get some help. If the blood is not the answer, she'll do a trial on caffeine and another pneumogram. Her IV band is safety-pinned to her shirt because she cannot be trusted, so she's still ready for a fight. But she looks comfy and was feeding great even after being poked a bunch of times. Mom may be the one who needs some anxiety pills.

Adelina Corleone

2007-06-06T04:08:00.001-07:00

Just when we thought we were out...

Adelina was doing well on Monday at her pediatrician visit and only had a few episodes with her feeds over the weekend. She's growing like a weed (up to 4lbs 9oz on Wednesday). The visiting nurse came out on Tuesday to check on Adelina and our little Ms. decided to turn blue out of no where an hour after her meal and hadn't even been checked out yet. I picked her up, blew in her face and stimulated her back but everyone was a "little" freaked out.

There were 2 more episodes and then the car ride back to Abington... they were waiting for us. I spent the ride poking her in the head to make sure she was ok. Sorry Addy :(

They put her through (and she's still going through) a battery of tests to check for infection, reflux problems, central apnea and whatever ever else is going on with her feeds. Dana was having trouble getting her nose tube down for the acid study, so she had some deep congestion that suction wasn't getting out. It's pushed down now !

Here she is with Nurse Dana before the sleep study... she found her thumb (thanks to my "partner" Judith for the pictures and for meeting a crazy Mom at the entrance to the hospital). Dana told Mommy to go home and come back in the morning... the sleep study takes 12 hours.

Day 77 The Homecoming Queen

2007-06-01T16:48:00.000-07:00

We had quite the send off with tons of well wishes... Adelina weighed 4lbs 4oz at discharge and is a little more than 17 inches long. We took some detour to get here, but Adelina fought hard for this day.

Here are the pics (drums)!

Adelina getting ready to get her picture taken... the glued on bow was the work of the hospital photographer. You can check them out (the first one is hilarious) online at http://www.growingfamily.com/webnursery/babypage_view.asp?URLID=5I4D9I9I2C

Addy posing (she's famous right?) with:

Doc Cleary (he was in the O.R. at the delivery) sneaking in his goodbye to Addy. Docs Snyder, Moom and Shrager were not in the house at the time. We got Doc Chang on video later.

Nurse Nadji (did I spell that one right?) saying bye bye. She took good care of Adelina during her stay.

Nurse Ann Marie! Ann Marie was Sofia's admitting nurse and also was Adelina's angel while she was stationed at Abington.

Nurse Patty also watched over our little lady. Adelina made a lot of messes for poor Patty.

Nurse Bea giving love to Addy before her send off... Bea is a special to us as she was with us as our sweet Sofia and Vincent passed away.

Also a special thanks to Grace, Dana, Cindy, Jenny, Kylie, Ann Marie (the other one!) for going the extra mile for Adelina to make her comfortable. And thanks to all the others we grew to know!

This was the scariest part about leaving... Adelina was disconnected to the monitor... no more bongs, bleeps and numbers. Just the Philips logo and a black screen.

Nurse Pat escorting our princess OUT THE DOOR! I remember feeling so strange when I took my first step outside after my month in the hospital without ever leaving my room... Addy took her first breath of fresh air and so did we.

Day 76 Adelina's Journey

2007-05-31T16:40:00.000-07:00

Have a Great Weekend Everyone... we'll post her homecoming over the weekend.

3/16/07
minutes old
1lb 9oz

3/25/07

9 days old

4/3/07
18 days old
1lb 10oz

4/12/07
27 days old
1lb 12oz

4/21/07
36 days old
1lb 15.3oz

5/2/07
47 days old
2lbs 6oz

5/8/07
53 days old
2lbs 12oz

5/17/07
62 days old
3lbs 9oz

5/21/07
66 days old
3lbs 14oz

5/27/07
73 Days Old
4lbs 2oz

Dear Adelina,

This blog was dedicated to your sister, Sofia, and brother, Vincent... but the blog is for you, sweet heart. Although you are completely unaware, you've inspired so many people with your story and your strength. We couldn't be more proud to bring you home tomorrow. You've taught your parents very valuable lessons - to be strong in the face of difficulty, to beat the odds and not to give up hope where hope was almost lost.

I hope that one day when you read this, you will understand how special you are to us always. The day you were born we were scared for you and today we are amazed by you. This is your story, your strength, your beginning... we love you Adelina. Welcome home baby girl B.

Mom and Dad

To the Doctors, Nurses and Staff at Abington,

I wanted to thank Abington Perinatal for giving me a few extra weeks by watching me so closely - without you, the chance to bring Adelina home would not be. You felt like my family at the time and gave me comfort and answers when I thought there were none.

Doctor Moomjiim and the nurses working the night of Sofia and Vincent's passing... we have never witnesses such caring and dedicated medical professionals. You will never be forgotten or thanked enough.

To everyone who cared for Adelina over the past months... We will continue to pray for you as you continue to make miracles possible. Thank you for giving our daughter your love.

Thank you and God Bless all of you

To everyone who has been following Adelina:

I want to thank you for keeping us going, supporting us, praying for us and thinking of our family. This blog has not only helped me keep everyone informed, but you've all allowed me to have "someone" who wanted to listen, day after week after month. Thank you from the bottom of my heart for checking in on her and wishing her well with thoughts and prayers.

I also want to thank everyone for their support over the loss of Sofia and Vincent. When we lost Sofia, the world came to a complete stop. Holding her as she was baptized and passing was the hardest thing I've ever done. Just when we thought it was all over, Vince was holding his son in the same way as I was with Sofia... a very brave little boy went to find his sister.

The donations to the March of Dimes and to Abington Memorial gave us a chance to help other premature babies and allow the memory of our children to remain in a very special place where angels come and go. We can only hope that our deepest thanks can be felt by everyone. Our children will be remembered long after we are all gone, thanks to you.

A very special thanks to Cousin Al for banking blood for Addy. I'm sure she'll tell you herself someday (at Family Fun Day of course) how you helped save her life.

Love and Thanks,

Jen & Vince

Day 75 Car Seat Big Kid

2007-05-30T14:53:00.000-07:00

Here we are PASSING a car seat test!

Addy is almost ready to come home. I went in this morning to watch her ride in the fake car and give her a bottle and some kisses. Then it was off to frantically pick up last minute items while Grandma ma had Gianna.

Weight today is still 4-3, just a hair over yesterday. She had her first formula bottle (one a day) and gobbled it up in 20 minutes. No episodes as of this afternoon to report.

I can't wait to show her her new room :) Stephanie Gordon finished a wall mural over the weekend... we'll post it when she comes home. Thanks Steph!!!

Day 74 It's A Date

2007-05-29T14:38:00.000-07:00

Adelina had one little episode w/ a feeding where she had to be stimulated, but she is still scheduled to come home soon... FRIDAY! She came into this world in an ice storm and she'll hopefully leave on a bright sunny day.

Do you think Dad is happy???

She has taken all her bottles by mouth and the NG tube was removed. Go Addy! She weighs 4lbs 3oz and change today.. no fortifier, no formula (that will start tomorrow). We're hoping she continues to gain weight until discharge and NOT have any more episodes.

It's scary (and pretty funny actually) when you get a paper that looks like this...

Day 73 Discharge Ordered

2007-05-28T18:00:00.000-07:00

To our surprise (I hear this is how it happens), Adelina has a tentative discharge some time this week if things go well. We had voiced our concerns and had a lengthy discussion with our nurse about what we can do to feel the most comfortable bringing her home. Unfortunately, the answer was that they are no guarantees but they feel that Adelina will be strong enough to recover on her own when she does have episodes. We will see about a monitor at our discharge meeting... I'll leave it at that for now.

She is growing well (still at 4lbs 2oz), so they also were to take her off of the fortifier in her milk. We hope she puts on weight without it and does not need to come home with it. She's most likely coming home with the vitamins and the priolsec. She will be supplemented with a higher calorie formula 1-2 times a day until the pediatrician thinks it can stop. She had to finish her a/m feeding by NG tube, but forcing a feed on her makes her weak.

Addy will still have to go through a hearing test, car seat test and a final eye exam for ROP. We will also meet to discuss her discharge and voice all concerns about monitors, drugs, feeding, etc. We are still in shock.

This is a hat from cousins Bridget, Doman & Olivia... Thanks guys! She's also wearing the outfit somewhere under that blanket.

Day 72 Bath Time

2007-05-27T17:31:00.000-07:00

Many of you check out The Fox Miracles along with Addy and we are deeply saddened by their loss. It's so hard to put into words how caring Judith and Jason are and what they are going through is indescribable. Please extend your prayers for them as we never understand why things like this happen. Livia will always be remembered by our family as a beautiful child whose parents loved her very much. I'm privileged to have met her.

Adelina is having a good day with feedings and has taken all by mouth. She had a clustered bunch of heart rate decreases during the feed the I had given her late night. I noticed on the first gulp that she had turned gray and removed the bottle... it was the wrong flow nipple and I'm glad I noticed. She struggled a few more times after switching to the slow feed nipple and then 30 minutes later had finished enough of the minimum feed.

I also was able to give her a bath for the first time... she was measured at 17 inches and 4lbs 2oz. We're getting to newborn size! If she can take her feeds by mouth for a few days in a row, she will get the boot and come home. She was taken off of the caffeine again this morning, so time will determine if she comes home with it or not (as well as a monitor).

I'm holding up Addy during her bath... she's all head and belly! We can't wait to get her home and get the hospital smell off of her.

Day 71 Doing Better

2007-05-26T06:38:00.000-07:00

Adelina is doing better with the caffeine and was able to take most of her bottles by mouth with minimal finishing through her nose tube. No episodes!! We're getting worried about bringing her home on the caffeine and monitors - we just want her to get what she needs and come home when she's ready.

She lost a little bit of weight, but is still up for the week so hopefully she puts on some by tomorrow morning. She's at 4lbs even.

This morning I babysat the Gilroy triplets (they're almost 12mo old), Gianna (14 mos) and Livia (almost 4) for a few hours this. We had quite the time and I'm pretty sure Gianna is ready for a friend :)

Will, Gianna & Ted (left to right) and Gianna hugging Olivia (per Liv's request)

I thought Andrew was in need of a mo-hawk... looking good Andrew!

Day 70 Nevermind, I'll take Regular

2007-05-25T04:30:00.000-07:00

Our morning phone call from Doc Shrager wasn't the greatest this morning... Adelina had many episodes of apnea (not breathing) and was to be put back on caffeine to help. He also had run some blood work on her to make sure that it was just the caffeine. Blood count is decent and so is her ritic (red blood cell) count is to be watched. Her prilosec was also increased for her reflux and we're hoping that this helps and we are not in need of anything else.

She did hit the 4 POUND mark today - Happy 10 week birthday Adelina!!!

Told you guys I needed some coffee!

Day 69 A Little Trouble

2007-05-24T20:23:00.001-07:00

Hi Everyone! It's just me, Adelina, hanging out in the continuing care nursery. Thanks for reading up on me and keeping me in your thoughts. I'm pretending to be sleeping...shhh!

Adelina is having an ok day... she pulled out her NG (nasal feeding) tube, so that's why she's showing off her cute face. She's having a few episodes where she becomes pale & shallow breathing and demerits for bradycardia. Her feedings are all PO (oral) and finished through the tube. She's had a lot going on the past few days with shots, eye exams, and her caffeine and formula being taken away... so we'll just watch her and see how she does. Addy managed to gain some weight back, so she's at 3.15 once again today!

Here's Vince (looking comfy?) with Krissy! Thanks for stopping in to see us!!

Adelina had a gift from Nina & Livia Fox this morning... Thanks Foxy Ladies

Day 68 Wait and See

2007-05-23T04:14:00.000-07:00

Adelina had to skip a feeding, so she lost a little bit of weight - 10 grams. She is doing well trying all feeds on the bottle and finishing what she can't through the tube. The adjustment to no formula or fat may have played a little part in the weight loss, so we'll wait to see what she does tomorrow.

Wait and see if always the game... we have another eye exam in 2 weeks for the ROP check. There are 5 stages of ROP. http://www.nei.nih.gov/health/rop/index.asp It can appear any time in these weeks, so we are hoping for the best for Adelina. For now - just "premature eyes."

She is doing well off of the caffeine - no episodes today!

Day 67 Make It A Decaf, Please

2007-05-22T16:26:00.000-07:00

This morning Doc Shrager ordered a decaf diet for Adelina... she was taking caffeine since birth to help with her episodes. It should take about a week to watch her without it, so we've made a BIG STEP towards coming home in the near future.

He also wants her to get oral feedings every time and finish with the feeding tube if she isn't tolerating, falling asleep, or getting tired. She sacked out on me this morning half way through the feed, but she's training to be a super star. Feedings went up to 49ml (a little more than 1.5 ounces) and she weighed 3lbs 15.1ounces. We're almost at 4 POUNDS!!!! Way to grow little lady!

Addy's last vaccine was given today, so she's all caught up with her 2 month vaccines just like a big girl would. Doc Koehler is coming in tonight to re-check her eyes again, so we hope that goes well too.

Big Sissy says "Come on already... I've been waiting forever for you to get here!!!!"

She worked hard helping Mommy put together the portable crib for Adelina. Thanks Gianna.

Day 66 See Ya Formula

2007-05-21T05:50:00.000-07:00

Addy weighed 3lbs 14.7oz this morning, so out with the high calorie formula. She's on her way! She's just getting fortified milk and vitamins now.

Today was also her second day of vaccines - Haemophilus B was on the menu. Preemies still receive their vaccines on their birth age schedule and not adjusted for their gestational age. Today Addy is a few days over 2 months, but would have only been a few over 34 weeks in the womb (40 weeks is term).

Jen Keil made a special delivery (she had my camera) and was able to take a quick visit. She took a picture of a rainbow for Adelina that was out from the rain.

Thanks Jen!!! She also helped me wrestle some Sun Chips out of the vending machine.

Day 65 Vaccine Time

2007-05-20T05:36:00.000-07:00

Adelina was able to start her vaccines today. She'll get one a day over the next few days instead of all at once (today was DTP).

Feedings were increased to 47ml over 30 minutes of gravity feeding, but she is to have up to a few bottles a day. She weighed 3lb 12.7oz this morning. We're hoping to stop the high calorie formula tomorrow and stick with the fortified milk. She just has to gain weight today to do so.

Dad popped in just in time for a bottle and to give Adelina a bath. They're putting Vince to work! They also measured her - she's 15 inches long now (up from 12.5 at birth).

Day 64 Burp!

2007-05-19T18:04:00.000-07:00

Adelina had a pretty easy day today. She gained almost an ounce since yesterday and is off of the micro lipids (fat). They will see if she continues her weight gain before deciding what to wean her off of next - the formula or the fortifier added to her milk.

She is taking 45ml over about a half an hours time... she tend to take longer with the non-bottle feeds and some drops in heart rate. She needs to get a little stronger & bigger. I was able to feed her at night and burp her for the first time... it's hard to hold someone to burp when they're whole head fits in your hand, but I got her to do it easily. Go Mom.

Adelina had a quick visit from John and Maria... even Adelina knew that John was on his way to his own suprise party! Happy 30th Johnny!

Day 63 She's A Calvanese Girl

2007-05-18T05:29:00.000-07:00

Nurse Grace said that after Adelina was given her small amount by bottle, she was screaming for more. She drank the entire thing - 1.5 ounces! Weight today is 3lbs 10oz. Gianna ate an entire ice cream cone today to celebrate (thanks Dana!). My girls like to eat.

Adelina is officially off of oxygen and her pulse oximeter montior (checks how well she is saturating oxygen throughout her whole body) was removed. No episodes today! Grace said that "pulse-ox"is for babies on oxygen and we're officially not. http://en.wikipedia.org/wiki/Pulse_oximeter

Nothing else is new... just waiting for her to grow a little more, feed entirely by mouth and only have isolated episodes. We're on our way! I am almost finished with her room and it's starting to feel a little more like we're bringing her home. It seems like so long ago that I was even pregnant and we're all excited to see her looking so well.

Day 62 From the Dorm Room...

2007-05-17T13:52:00.000-07:00

...to her first high rise apartment. Adelina has amazed us once again by regulating her own body temp for quite some time now. So big girl has now has graduated to the open crib. Last time we saw her in an open crib, it was for emergency access.

She weighed in at 3lbs 9oz and feeds were increased to 43ml. She breastfed for 15 minutes and was weighed before and after to see how much she drank. Adelina took 5cc's! Feeding makes Addy tired and she had a drop in heart rate followed by a desaturation of oxygen in the middle of it. Addy recovered on her own, so no demerits.

She is receiving the microlipids for extra calories, prilosec for reflux, vitamins for anemia and caffeine for apnea. We're hoping that she is able to come off the lipids soon as we prepare her for normal feedings.

Look at Adelina in her big girl open crib - welcome to the outside world!

Day 61 Bottle Time & Mad Mommy

2007-05-16T13:38:00.000-07:00

I was a little suprised that the nurse didn't wait for me to get there when I called to tell her what time I was coming in to feed her ... but she (who will remain nameless) went ahead and gave Adelina her first bottle (she only gets one try a day) at 10am this morning. Good news is that she drank 15cc and received the rest through her NG feeding tube. Bad news is we missed out on another "normal" parent function, since that's about all we can do for her right now besides stare at her.

She had one apnea today and is still on the caffeine to help. She most likely will have to come home on the caffeine and monitors, but we'll take her. She is still on schedule for coming home close to her 6/29 due date.

Weight today is at 3lbs 7oz - she's growing like a weed taking 42ml/30 minutes every four hours. If they can keep her feeding every 4 hours, Mom will be quite happy :) Everything is going very quickly...

Day 60 Big Gulp

2007-05-15T06:57:00.000-07:00

I figured I would spare the pictures today - Adelina tried out her first feeding for 10 minutes. She was able to stay awake for most of it and swallowed twice. It's hilarious to think that this is exciting - someone swallowing and breathing. I really felt like a Mom today, even if it was for only 10 minutes.

By the end of the night, Adelina was switched to "gravity feeding." I pictured the Gravitron at the Southampton Days Fair from when I was a kid, but it's just hanging up the feeding on a hook to go into her stomach instead of being pumped in with the machine.

She weighed 3lbs 6.4oz this morning, so we're back gaining in decent amounts. She's ordered to feed by mouth (or at least try) once a day, so hopefully she can take a bottle soon. Adelina had one drop in heart rate during a feed and is her usual self (breathes rapidly and shallow with a high heart rate) at the end of the feeds. They have a name for it ( tachypneic), but that's a bit much for pronunciation.

Day 59 Visits Galore

2007-05-14T05:29:00.000-07:00

Adelina is doing well today and was visited by all 4 Grandparents and Dad at different times. She was very popular for a Monday! Everyone said how big she is getting and how pretty she is... she's the prettiest girl on that side (Livia and Nina are holding down titles on their sides).

Addy is still on the same feeding schedule of 30 minutes, but getting just a little more at 39ml (45 is 1.5oz). She didn't gain very much weight, but they count every little gram. She is due to start mouth feeds this week, as they would like to see her try before her gestational age is 34 weeks. We're in the middle of her 33rd week.

She has a bit of a suck/swallow problem, but is practicing on her pacifier. She tends to drift at times when she is, so we'll see how it goes!

Day 58 Happy Mother's Day

2007-05-13T17:23:00.000-07:00

A little truth serum from someone who keeps things to herself...

I was able to see Adelina this morning, get her dressed, changed and swaddled and put her in my arms without any help from the nurses. Today was the first day I wasn't scared to hold my baby and didn't spend the entire time staring at the monitor. I realized that now - 2 months later - Adelina is not in pain any more, she's not uncomfortable any more, and she's not under stress any more. That was the best present I could have received today.

Happy Mother's Day to every Mother and anyone missing theirs.

Adelina was 3lbs 4oz and was wearing the shirt Shannon Gilroy bought her. Thanks Gilroys!

Here are four generations of Burns' Ladies and Great Grandpop (on my Mom's side). Can you tell who's only half Irish???

Day 57 Try, Try Again

2007-05-12T20:15:00.000-07:00

Adelina has been at room air w/ barely any pressure through her cannula, so this afternoon she was free... again. As of a 8pm check-in with nurse Lisa, only one desaturation (blood is not oxygenating her entire body well), but she had recovered from it on her own.

Her feeding tube was temporarily removed to give her nose a break along with the cannula - we were there for the unveiling of little Addy's face w/o tubes all over it.

She is now 3lbs 3oz and no longer in her birthday suit - she's swaddled in her isollette and maintaining her temperature very well on her own. I'll be washing all of Gianna's preemie clothes to bring in tomorrow :)

We're hoping that this is her last day on the cannula - she wasn't really using it, so it's been a bit of a security blanket for her. She had three 'episodes' yesterday on the cannula and only one for the day without it.

Addy is starting to look like a (miniture) baby now! Adelina has graduated to preemie sized diapers and is ready for preemie clothes! I had to buy "micro-preemie" clothes for her before. Go Adelina!!! We are amazed at how she is growing - it's like a window into a pregnant belly.

Day 56 Nothing Much

2007-05-11T06:06:00.000-07:00

"Nothing Much" going on today... maybe Pete Adams can sing it for her someday. She's still at 3lbs 1oz and breathing room air with a little added pressure.

They've increased her feeding time to 37ml (over an ounce) over a 30min time period (with a 3.5hr rest). That's faster than Gianna ever drank an ounce ... but then again, it's going through a tube right into her belly. She still takes shallow breaths afterwards and had one small episode late last night in the middle of her feeding (while I'm holding her of course).

I forgot my camera, but her 3lb sign was posted! I'll get some tomorrow morning. She looks great all swaddled up sucking on her pacifier. The nurses said she's got 'attitude' and still fights to do what she wants - sometimes it's eating before it's time to, getting out of her snuggly, screaming crying to get away from nose drops or all of the above. We love it.

Day 55 And We're Movin On Up

2007-05-10T06:49:00.000-07:00

I walked in the NICU and NO ADELINA???? She moved across the hall to "Continuing Care." Nothing changes over there with monitoring, it's just a place for more stable babies to move if they are to be in the nursery for a while BEFORE THEY GO HOME. Adelina had to make room for more pressing cases, which is great news for us.

Adelina and Mom sharing some laughs about the "old times" in the Special Care Unit

BIG NEWS ON WEIGHT GAIN - - -

Adelina weighed 3lbs this morning AND.... weighed 3lbs 1oz at night. We'll be expecting a "3lbs" sign at her new bedside tomorrow :) A few more ounces and they'll start to wean her out of the isolette and into clothes and blankets. She also measured 14 1/4 inches (she was 12 1/2 at birth).

Her cannula (again - it's can-u-la or cannoli) was weaned to the low pressure (from 1.0 to 0.5) and room air 21% in the early morning... she wasn't having it (she had a Brady w/in 20 minutes). She was hanging strong at the room air % for the rest of the day. Good Job Adelina...
It's a game we have to play with her to get her off of the cannula again. One bad day off the cannula and we're back to where we were a week ago (hence the "two steps forward, one step back" NICU motto).

Adelina received a visit from Eric & Jaime Martin... Aren't you supposed to be in school Jaime???

Day 54 Good Follow Up

2007-05-09T18:11:00.000-07:00

Adelina had her follow up eye exam this afternoon. They re-check for blindness, retina detachment... you know all those things that are just wonderful to think of. She did fine, but was quite aggitated from the exam, so she had a Bradycardia while the doctor was checking her. That was her only one for the day.

A feeding was skipped for the eye exam, but she weighed 2lb 14oz this morning, so we were happy that the lasix worked sucessfully for her. Doc Moom increased her feeds to 35ml over 45 minutes. Hopefully by next week, we will try and introduce her to mouth feeds.

On the breathing front - she was lowered on the cannula to 22% and doing well. We're hoping to eventually get off of the cannula and work on weaning out of an isolette, mouth feeding and steady breathing... then she can come home, sounds easy enough... right. We're hoping for sometime in July. You can do Sweetie and we'll all be waiting!

Day 53 Adelina Hears Angels

2007-05-08T16:01:00.000-07:00

I wish I could upload this video to this blog

(Thanks to the Theresa Fabbi & the Heckels for the blankies)

Adelina loved her visit from the hospital's harp player. She was smiling and awake the entire time, trying to find where the music was coming from. It made everyone around her smile... look how focused she is!

We had a pretty uneventful day today... trying to sit tight and lay low on some higher oxygen. The lasix helped Addy lose a little bit of the fluid weight, so Dr. Chang said to wait and see how she weighs in later. She had some shallow breathing after feedings, but nothing short of what we feel like after a Thanksgiving Dinner according to nurse Ann Marie.

I held her for a few hours swaddled like a mini-burrito and she seemed to like it. This helped me get a good look at her during a hold and talk to her. Of course, it also opened an opportunity to put her in a cute little shirt and matching hat. She smiles a lot when she's awake and has big dark blue eyes.

Day 52 You Win Some...

2007-05-07T17:23:00.000-07:00

Adelina had a bit of a rough night with a lot of clustering episodes and drifts (these are nice ways to say that she doesn't breathe and her heart rate drops). She was put back on the cannula and seemed a little more stable at 21% and 1.0 pressure.

Around 5pm the cannula was put up to 23% after a day of too many red lights & alarms. My visit w/ her was aging me a bit with a couple big Bradys... so I'm glad she's back to comfort. At least her nose got a little break from the cannula. She's very pale, but her hemoglobin from this morning signaled that she should be able to make red blood cells on her own and not need a transfusion. The anemia may have something to do with the sudden increase in drifts/episodes. Otherwise, all of her blood tests were fine.

This morning, she weighed in at 2lb 14oz (up 3oz, but that's not so great)... she was a little swollen from fluid retention and blood pressure was high, so they gave her some lasix (a drug which acts on the kidneys to promote water and salt loss used to treat heart failure, fluid overload and chronic lung disease).

Adelina started listening to Hulk Hogan and is now taking vitamins w/ her feedings (up to 34ml of the formula/hind milk/lipid mix over 1hour). We're still up for tomorrow's move to the other nursery... we saw Kate Marino this morning during her car seat test... she looked good and ready to give up her spot. Thanks Kate!

Gianna says "there's room for one more Addy, please come home soon"!!!!

Day 51 Toot Toot Riot, RIOT!

2007-05-06T17:43:00.000-07:00

She's either coming up with a new mathematical theorom here or wondering how the Sopranos will go tonight. As long as she keeps breathing, we're cool.

Adelina is on her 2nd day of free air... she's having a lot of drifts in breathing/heart rate, but recovering well. The nurses said that she's allowed so many actual episodes per day. She had a big Brady before Vince held her today, but then did well swaddled up and out of her cage.

She was a little gassy from the formula they are mixing in her milk, hence the title today. Her stomach is tolerating the new mix and is still soft to touch... we have to keep a close on her not to get a distended belly. They've increased her to 32ml over the 1/4 hour feeding schedule with the 0.4 lipids. She weighed 2lbs 11oz this morning!

Adelina still is taking caffeine citrate (for apnea), prilosec (for reflux), ferrous sulfate (to help her make red blood cells) and the tobramycin (for the eye infection).

Day 50 Huge Day, Big Progress

2007-05-05T16:40:00.000-07:00

What's missing in this picture??? It sure isn't a smile.... NO CANNULA!!!!!!!!!!!!! This could be my favorite picture of her.

As of mid-morning, nurse Lisa decided enough was enough. Adelina's nose had to be suctioned so much from the dryness of the cannula, that she gave Addy a spin on her own. Think she likes it??? She had one episode of desat and Brady and had to be reminded with a little rubbing, but then we did Kangaroo for an hour and ten minutes and she did great.

Her feedings are now taking place over a 1 hour on and 3 hour off time period. She's now getting 32ml, which is a little over an ounce of the same special cocktail and weighs 2lb 10oz. She looked big for the first time, it's amazing...

The docs are ready to move her to the step-up nursery... we're on a waiting list and next in line. We need Kathryn Marino to go home!!! We've been waiting and hoping for these things to happen and now that they are here, it's a little scary. Weaning her out of the isolette will depend on how well she can regulate her own body temp and of course her weight. She's on a gain cycle, so we hope it continues and she grows some chins and leg rolls. She has to be at least 3lbs to wear clothes on a regular basis... and then we'll be styling 24/7.

This is a picture of Adelina in the NICU and Gianna (from her short stint there)... see my hand compared to there size - Gigi is 3lbs heavier here.

Day 49 Up 1 Pound

2007-05-04T14:27:00.000-07:00

Happy 7 weeks Adelina (this would have been our 32 week goal day)

Adelina is gained almost another ounce and we'll round it off as 2lbs 8oz. Although she is packing it on at a normal rate, she does need the extra calorie supplement and the fat mixed in her milk. She has Calvanese in her - she can't sit still and she's always trying to do things before her time. It burns a lot of energy.

Well, we're almost at the 50 day mark and Doc this morning said that they are no longer treating her for lung disease/RDS (Respiratory Distress Syndrome) but treating for apnea. Adelina is desaturating (she doesn't oxygenate her entire body well) a decent amount during the day, but she's recovering on her own. Sometimes it has a lot to do with her reflux and not knowing how to swallow or just moving around like a maniac. Hemoglobin test this evening to see if she needs more iron (she tends to be a bit anemic).

We're still staying away until tomorrow w/ big Sissy still sounding like a barking seal and Mom terrified of spreading germs...

No sleep day 4 for Mom, but it's nothing like what Adelina is going through.

Have a Great Weekend Everyone - And you thought gaining 1lb was no big deal!

Day 48 Smiley

2007-05-03T16:53:00.000-07:00

I went undercover to the NICU to drop off some milk for Adelina and nurse Grace let me take some pics and watch her give Adelina her care before her lunch. She is now 2lbs 7ounces and she looks like a baby now... and today looked just like Gianna.

She is tolerating her increased feedings and low cannula settings well. She was having some heavy reflux that was registering as apnea and bradycardia, but she was just holding her breathe and came out of it on her own.

Grace also talked to me about how to handle her in her isolette when she's awake to stimulate her. She seemed to really like it and was wide eyed and happy.

It looks like she's smiling here...

Look how much bigger she is!

Day 47 The Marlboro Man & Little Sis

2007-05-02T12:12:00.000-07:00

Our little Gianna woke up in the middle of the night sounding like the Marlboro Man... out of no where!! This morning her baby Doc said she's contagious :O So... no Adelina visits until further notice. The nurses said we can go in masks and gowns if we're feeling well and no holding her, but we'll wait.

Little sis has a little eye infection that they are treating w/ antibiotics. But she's feeling well and they've increased her feeds. Look out Gianna, she'll be gaining on you soon... just another 21 lbs to go!

Today's Stats:

Nasal Cannoli lowered (nice!) from 1.5 to 1.0 air pressure (at 21% room air)
Feedings increased to 30ml or 1oz
Weighed in at 2lbs 6oz (even better)
Antibiotics for 5-7 days
Few drifts here and there as usual

Day 46 Whew!

2007-05-01T14:40:00.000-07:00

Big Day for Addy all around...

Her temps were back to normal this morning, but the BP was still a little high. Eye drops were prescribed for the possible infection.

She GAINED BACK 2 OUNCES on the new cocktail of half fortified breast milk and half high calorie formula. She's trying to watch her figure for some reason, but we're onto her!

Dad (busted falling asleep in the chair) snuck some kangaroo time in this afternoon and wasn't as nervous as his usual... Adelina is getting better with her breathing. Nurse Patty weaned her cannula from a 2 to a 1.5 while Vince was holding her. She had a few drifts, but all in all did well. They are going to try and wean her off of the cannula all together if things go well. This could take some time, but we're going to try.

Adelina has a hemangioma on the back of her neck that is starting to get pretty big for her little body. Doc Snyder said that they will keep an eye on it as she grows... we have to watch out for any rubbing or wear and tear from clothes as not to irritate it. It's in a good place, not near her nose or eye, etc... http://en.wikipedia.org/wiki/Hemangioma

Nurse Patty doing Adelina's care... thanks Patty!

Happy Family !

Friendly neighbors!

Day 45 Ugh!

2007-04-30T14:22:00.000-07:00

I was able to get to the hospital for Ms Adelina's 8:30 feeding... at first glance, I thought that someone had put ointment under her nose. When the nurse came over, it was confirmed that it was not ointment and was a runny nose... her eye was also weeping some lovely substance. Her blood pressure was a bit high because her body temps were a little high all day as well. The nurse said that she's been her usual self, so she didn't think she was getting sick??? Let's hope not.

Addy also lost an ounce today, so they switched her to a mix of fortified hind milk (the end part of the milk) and a high calorie formula. This bumps her caloric intake from about 23 to 27 so hopefully this works. She's been using a lot of energy on the cannula - we're down to room air now at 21% and doing well.

No pictures tonight since I was alone and forgot to take pictures before they took her out of her "dorm room." She did want a couple of Stones posters and a lava lamp, so I'll have to look through Vince's college things...

Day 44 Schlemeel, Schlemazel, Hasenfeffer Incorporated

2007-04-29T18:28:00.000-07:00

We're Gonna Do It - On your marks, get set and go now....

and yes, I had to google the theme to Laverne & Shirley to spell the title.

Adelina gained another ounce today - she's 2lb 4oz!!!!!!!!!!!!!!!!!!!!! Way to GROW, we're gonna do it! We're very proud of her.

No other changes since yesterday. I did have a few people ask me how to pronounce "cannula" so it's can-u-la not cann-oola. If you said cannoli, that's fine.

The MOD Walk was a good time... Marcy made shirts for our team with all of my preemies on them Gianna 35wks and Vincent, Sofia & Adelina 25wks. Thanks Marcy and Renee (and baby?), Juliana and Grandmom Marge for walking for my family.

We also saw Fox Miracles walkers and NICU friend Joseph's family... thank you to their friends/family for checking in on our blog - we're amazed at how many people read up on us!

Also a special thanks to whomever put Adelina's name on the prayer list at St. Bedes... we heard it through the grape vine and were very touched. It's incredible how many people are thinking of her. We can't wait to tell her all about it someday.

Day 43 Biggie Fries

2007-04-28T12:14:00.000-07:00

Adelina gained an ounce today - she's up to 2lbs 3oz!!! The Docs say that getting to the 3lb mark takes a while, but once they get there the weight gain happens much quicker. They increased her feeds to 27ml over her 1.5on/2.5off meal times. She still gets a Biggie Fry during her meal - the fat looks like white paint that the nurses put in her feeding tube.

We visited her in the morning and I held her for her feeding - it takes her about 20 minutes to get settled and then she was out cold. The getting settled part makes me forget to breathe too!

Our roommates, the Marino's, were making a pit stop in the nursery as well... Proud Papa here! It looks like Mike took Marisa to work with him, but he's just by the nurse's computer.

Day 42 Can't Say We Didn't Try!

2007-04-27T16:42:00.000-07:00

Docs tried Adelina this morning on 21% (room air) on her cannula and it didn't work out so well, but they did wean her from 23% to 22% and she's good there. At her size and age, 1% makes a big difference with her episodes.

Her hemoglobin came back a little lower than last time (from 15 to 13), but still good and expected for anemia. They'll make sure that she doesn't need more blood and keep her on the iron.

Feedings and weight remained the same as well as the fat, lipids, caffeine, prilosec and iron... and whatever else she needs! Sounds like she's 80!

Who couldn't love this face?

Have a Great Weekend Everyone!

Day 41 Chunky Monkey

2007-04-26T10:46:00.001-07:00

Adelina is awesome - she gained back the weight and then some. She's 2lb/2oz as of this morning. They'll draw some more blood to check on her anemia tomorrow and will still receive iron in her feedings. Since she's bumped up in weight, the docs increased her to 26ml (remember 30ml=1oz) over a 1.5hour on/2.5hour off cycle. They want to get her to 1 and 4hours.

I don't have Andre the Giant hands... this is a good reference picture.

So as she gets bigger and older, we hope that the term "Brady" can go back to referring to Greg, Marcia, Peter, Jan, Bobby and Cindy.

Dad stopped by after work to see Addy and she had a few little episodes when he touched her, so he opted not to hold her. I went in the p/m and held her for 2 hours and she was quite fussy most of the time and had 2 episodes... Her day nurse had trouble getting her settled in her "snuggly" all day - she's determined to get where she wants to go!

Cousin Frank stopped in to meet his new cousin and invite her to family fun day 2007. He was McGruff the Watchdog for us since I couldn't see the monitor too well from where I was sitting. The flash is making it hard to see Addy, but you can make out her making the "peace" sign with her hand.

Day 40 In Your Eyes

2007-04-25T10:27:00.000-07:00

Adelina's eye test came back with good news... no reported problems so far, just the immaturity. They'll test her again in a few weeks for ROP. http://www.umm.edu/ency/article/001618.htm

One feeding had to be skipped for the eye drops, so she dropped a quarter of an ounce... but we hope to make it tomorrow. Everything is the same for medicines, feedings and breathing, so less news is just fine with us.

I stopped in for some more Mom time and kangarooing with Adelina during her feeding. The Dominic Grandparents came by to see her out of her "cage" and hung out for a bit. She forgot to breathe once when sucking on her pacifier, but she recovered on her own as soon as I took it out of her mouth.

Day 39 Dad and Adelina

2007-04-24T19:39:00.000-07:00

Adelina has gained 1 ounce over night... she caught up for yesterday's stand still. Doctor Moom says her belly still looks quite full, so we're keeping the feedings and the times the same for now. The cannula is set at 23% and we're waiting on eye tests to come back now from the specialist.

Dad stopped by today after a meeting was cancelled last minute... he was just in the neighborhood (in DE) so he stopped in to see her. She opened her eyes when she heard his voice through the doors and was able to stay awake for twenty minutes. Vince thinks she has my eyes, but who knows... a Dominic nose, Calvanese toes??? Let's hope not.

For anyone interested in the March of Dimes Walk on Sunday... registration is at 7:30am and the walk starts at 8am... Bucks County Community College in Newtown, PA. Gianna and I will be walking with some friends and family. All are welcome to come!

Day 38 Good Bye CPAP

2007-04-23T09:02:00.000-07:00

During rounds this morning, Adelina was found sucking on her CPAP prongs... later in the morning had disassembled it from her head. We got the call that she was being put 100% on nasal cannula. This is huge for Adelina (she just turned 30 weeks over the weekend)! The tubes are taped to her cheeks instead of on the hats she was wearing. I did kangaroo care with her for the first few hours over her original cannula limit to make sure she was ok and she did great the whole time! I ended up staying there until midnight with her.

She is still on the same feeding schedule and amounts... no weight gain today (still 2.0lbs).

We also got a visit from Jen Keil... AND we have new neighbors - THE MARINO TWINS!! Congrats Mike and Regina - we're even in the same area in the NICU... across and next to Adelina. In this picture of Jen, those white privacy gates are blocking the view of the twins...Jen said Adelina's pictures don't do her justice to see how small (and of course pretty) she is.

And here is Nurse Jenny... she is one of our favorites! Adelina says thank you Jenny.

Day 37 Milestone

2007-04-22T18:12:00.000-07:00

"Yo Adrian, I did it!"

Our little girl has finally reached her weight milestone of 2 pounds. Good work Adelina! I guess all that pumping and separating milk for higher calories is starting to pay off. Nothing else has changed today for her care ... we're in a bit of a holding pattern and hoping she continues to gain weight and do well on her cannula. I was able to do 2 hours of kangaroo care this morning... thanks to Gina Delp for keeping me company on 20 minutes notice.

Day 36 Holding Steady

2007-04-21T17:49:00.000-07:00

The nurse called Vince's cell phone as we were pulling up and we almost had a heart attack seeing the number on his caller id. She just wanted to make sure we were coming because Adelina was all dressed up in her new duds to see us!We both were able to do kangaroo care with her... she had one Brady for the entire day and of course it's when I'm holding her. A firm rub on the back and head from Mom and we were back in business...

She's blowing kisses to everyone here!

Addy's still on the caffeine (to give her a little energy boost) and prilosec (for the reflux). No weight gain today, but then again... no weight loss either. We're hoping by tomorrow she hits 2 pounds. The feedings were increased to 25ml (30ml = 1oz) over 2 hours with a 2 hour break afterwards.

Nurse Shannon getting Adelina in place for kangaroo care... All those wires are attached to our little girl. It's hard to see how tiny she really is in all these pictures, but this picture gives a better idea.

Look at these numbers on the nasal cannula and it's set at room air! Heart rate 145, SpO2 100% and resp 38. Keep it up Adelina - we're so proud of you!

Day 35 Almost There

2007-04-20T07:24:00.000-07:00

Today was my goal date - 30 weeks... Adelina sure doesn't look 30 weeks, but we're almost at a milestone. She weighed 1lb 15.3oz this morning, so she's almost 2 pounds.

You Can Do It Adelina!

The Docs have changed her routine to 8 (that's huge) hours on nasal cannula to 4 hours of CPAP. Her first go today ended at 7:30pm and she did wonderful - no episodes at all. When they put the CPAP back on, she had removed it at least 5 times in 10 minutes. She's getting used to the freedom and comfort of the cannula, but she's not quite ready for using it all the time yet. Her stats weren't as good on the CPAP because she was fighting it the whole time. She had a couple little episodes while we were there, which is always hard to watch... she's so uncomfortable and her face shows it.

The CPAP is still set at 21% (room air) and the cannula was weaned to 25%. Blood count came back perfect today, so cousin Al's blood was all she needed. That was her 3rd transfusion since birth, which isn't too shabby.

Gianna was enjoying the weather and having a cool treat w/ her new shades... she wants to know when her little sister can ride bikes.

Day 34 Growing and Glowing

2007-04-19T15:03:00.000-07:00

Adelina was having a rough time in the middle of the night yesterday and was given 13cc's of cousin Al (thanks to Als again)... her color came back and she was back to her old self by the afternoon. This morning she weighed 1 lb 14oz :)

The CPAP is down to 21% (same air we breathe) and her cannula is at 26%. She is doing most of the breathing on her own. Doctor Moomjiim has put her to 4 hours on CPAP and 4 hours on cannula starting today... she did wonderful! I was able to hold her for 3 of those hours today... she was fussing for a while and kept dropping in O2 and fighting her hat (it holds the cannula on). We got her a new one and she was happy as could be. She wanted to be held like a big kid with her head in my elbow crook and sucking on a pacifier, which is the size of a Qtip. It's amazing to see how small she is and what she is doing - we're very proud of her. She's been lifting up her head and trying to turn on her sides - total maniac.

Here she's passed out cold with her new hat... the bandage on her hand was from the blood transfusion. We bought her some clothes, so she's not hanging out in the buff all the time. Thanks to Livy Gilroy for thinking of her being naked as well. I finally left some disposable cameras for the nurses, so hopefully they get her in one of her new outfits.

Day 33 Waking and Sleeping

2007-04-18T04:54:00.000-07:00

Adelina had a pretty eventful night last night... when I got there she had made her way out of her diaper and was mooning me (she was on her belly). About an hour into Kangaroo Care, nurse Kylie starting her feeding... within minutes she started gagging and then proceeded to pull out her feeding tube.

She was wide awake for about 10 minutes at a time... she's starting to be able to sleep and wake instead of just opening her eyes for moments at a time.

Adelina had no episodes yesterday and the nurses are trying to give her a little more cannula time at each run through... we're hoping to wean her off of CPAP because her belly is a constant worry. She's down to 23% on the CPAP - she weaned 1% herself last night!!! This morning, it was set to 22% according to the doctor with only a few episodes. She is getting a little iron because of anemia, but her numbers weren't too bad and it was expected.

Oh and Uncle Nashy stopped in to say hi last night as well... he's making sure everyone knows the baby next to us is NOT his.????

Day 32 Straight A's

2007-04-17T08:17:00.000-07:00

Vince was able to catch Adelina with her eyes open during her switch back to CPAP... we don't get a chance to see her w/o anything on her head and face! Look at all that hair - she has more than her sister!

Adelina's test results were very good yesterday and the prilosec seemed to be helping her with her reflux and belly distention. She gained a little bit today (less than an ounce, but we're counting). She's due for a follow up head x-ray later today to look for any bleeding in her soft spot - let's not get too technical here...

The nurses put up a birthday sign for Addy - we're waiting for the one that says she weighs 2 pounds! Her little area is decorated with a lamb from DL and Julie, cards from everyone, a Saint Gianna baby pendant (thank you), and pictures of her big sister... I just bought her some clothes online from a NICU store - she'll be rocking in pink soon.

Happy 13 months to big sister, Gianna, who found the toilet paper this morning...

Day 31 Happy One Month Birthday

2007-04-16T06:15:00.000-07:00

Happy One Month Birthday!

Adelina was having quite a few episodes yesterday around the end of her feedings from some acid reflux. Her body's natural response to it is to hold her breath, which causes her to desat...she was started on some medicine late last night to help her out with the reflux. Her belly had a lot of distention, from the CPAP air, so a battery of tests were scheduled this morning. As of my morning phone call, she tolerated all her feeds last night and no episodes:)

She is still on the same feeding schedule of 22cc over 2 hours with a 2 hour break and her CPAP was set at 25% this morning. The a/m weigh in was 1.13, so at least she didn't lose any!

I'll post her results later today when they come back from the lab.

Last night we had a visit from Marcy Lutz - I tried to get out of the picture, but it was a little difficult taking it and holding Addy at the same time. Thanks for battling the lovely weather to see our little fighter... Merry Christmas?

Day 30 "Bologna"

2007-04-15T12:20:00.000-07:00

A call from Doctor Cleary this morning called Adelina's weight loss "bologna." She was 1lb 13oz this morning, so it looks like a false read yesterday morning. We're still going to give concentrated milk w/ fortifiers for good measure, but the feeding amounts are also increasing to 22cc over two hours with a two hour break.

Adelina is also being switched to a nasal cannula schedule of CPAP for 4 hours, cannula for 2 hours... we're giving it a try, so we're hoping for a good outcome!!!

Day 29 Adelina Jenny Craig

2007-04-14T05:23:00.000-07:00

You might have thought A.J.C. stood for Adelina J Calvanese, but it's really Adelina Jenny Craig....

She managed to drop back to 1.10 today, so I now will be seperating her milk for more concentrated feedings. Hopefully with the added fat and the milkshakes, she'll kick it up a notch.

She took two 2 hour rides on the cannula (one w/ Mom and Dad) and did great. Her CPAP was weaned to 26% by the end of the night. Doctor Snyder thinks she is doing wonderful right now and believes the change in milk concentration will make a difference. Only one bradycardia for the day...

Day 28 No News Is Good News

2007-04-13T14:03:00.000-07:00

Adelina had a pretty uneventful day (yeah!) - everything remains the same with her feedings and she hasn't had any episodes today. Her CPAP was weaned to 29% and had a successful late night spin on the cannula.

She hasn't gained any weight today, so we'll see what happens tomorrow... All in all, she had a great day :)

Day 27 Big MaMa

2007-04-12T18:40:00.000-07:00

Adelina has managed to finally get in the groove of gaining weight... she's up 3 ounces from her birth weight to a whopping 1lb 12oz!! We're hoping she can continue to tolerate the 2 hour on and 2 hour off feedings long enough to put on some more lbs.

She was having a good day on her CPAP and took another swing on the cannula. I was able to hold her for entire time on the cannula. She was making all kinds of little noises and rooting around - her instincts are amazing. She was put back on CPAP after it was over and was able to be weaned down to 29%.

Regina Marino came for a quick visit. She's still cooking her twins and Adelina told the nurses to keep some beds next to her open. She wants to be the first to meet them!

Day 26 Minor Glitch

2007-04-11T13:48:00.000-07:00

At 2:45 am Adelina was tried back on the nasal cannula and only lasted 15 minutes before she was having episodes of bradycardia and had to be put back on CPAP. She did well once she was back on and her heart rate came down finally this morning in the 170s.

A second try around dinner time today on the cannula was a success and Dad was able to hold her for a while. She was making a lot of faces and awake the entire time.

Her feedings remain the same 2 hours on and 2 off, but today fat was added to her milk. She has managed to gain some weight - today we are at 1lb 11.5oz - and hoping to continue gaining .5-1.0 ounce(s) per day from here on out.

Thanks again for everyone checking on Addy and to Sammie for the blinkies!

Day 25 Test Drive

2007-04-10T14:51:00.000-07:00

Adelina was still having a lot of air in her belly from the CPAP and since she tolerates having it out for a bit, Dr Cleary decided to give her a test drive on a nasal cannula. http://en.wikipedia.org/wiki/Nasal_cannula Her heart rate was high today, so we're waiting on a call from the doctor and her respitory treatments were put on hold (so they don't increase it more).

She was set at 30% and her respitory was in the 70s and O2 at 100% the entire time. GO ADDY! Hopefully her belly was getting a rest from all that forced air from the CPAP. She was on the cannula for a total of 2.5 hours. Of course my camera battery was dead when I went to take her picture... but she looked very peaceful w/o the contraption on her face!

Feedings were put back on after a second round of belly and chest xrays to rule out inflamation in her intestines.

Day 24 Full of Hot Air

2007-04-09T14:45:00.000-07:00

Adelina had a very bloated belly this morning and when they pulled back on her feeding tube, there was 8 cc's of AIR caught in her belly. Her CPAP allows her to breathe, but she tends to swallow a lot of the air as well.

CPAP was weaned to 23% by dinner time w/ no reported episodes since yesterday. Her morning chest xray looked great (for what they expect to see at her age) and no infection reported. Feedings are remaining the same amount as before.

Day 23 Happy Easter

2007-04-09T13:50:00.000-07:00

I went to visit Addy after church to bring her some Easter cheer and of course she had to have an apnea as soon as I got there. She was very uncomfortable the entire time I was there with her. After a call later in the day to her nurse, she made 4 dirty diapers... I guess she needed to make some room to breathe. After the BM(s) no more episodes and she was sleeping well again.

Her O2 had to be raised to 25% for the day.

Here is big sister Easter morning after church! She wished her little sister was home to open their baskets together... next year.

Day 22 Big Day for Breathing

2007-04-07T12:51:00.000-07:00

Today Adelina was weaned to 21% on her CPAP... if you recall, this is what we breathe. So only "room air" is being given to her. She is breathing in the 90s w/ her SpO2, so we couldn't ask for more. Feedings were increased to 5cc/hour - that gives her 4 ounces/day. She had some troubles digesting it all, but not too bad. The milk is fortified w/ extra calories, so we're trying to fatten her up (she's still 1lb 10 oz).

She is scheduled for blood work on Monday - her color is a little pale today. They'll be checking for signs that her body is getting ready to make more red blood cells and check her count before deciding on another transfusion.

Vince and I both got to hold her this morning - she did pretty well with a little extra oxygen for a few hours!

She also received a visit today from Aunt Meg and cousins Chris & Danny. Big cousin Chris went in to introduce himself... Danny was chilling in the waiting area drawing pictures.

Day 21 Happy 3 Week Birthday !

2007-04-06T16:15:00.001-07:00

Adelina's first 3 weeks of life are a miracle and she continues to astonish us and the doctors... we continue to knock on wood. As of her a/m and mid-afternoon check in's, she has been behaving herself; not one "episode" of forgetting to breathe as of noon today. Her body temps are still normal, so thoughts of infection are ruling out.

She has gained 3/4 of an ounce and fortifier was added to her breast milk for extra calories. She's still tolerating her feedings and keeping strong (sometimes I think it's for us).

Today's Stats:

Bubble CPAP at 24% (we breathe 21%) as of late afternoon
Fortifier added to breast milk - feeding amounts same as last night
NO apnea/brady as of dinner time check in
Body temps average 98.2
Weight 1lb 10oz

If anyone has any extra prayers, friends of ours in the NICU, who had their triplets one week before us (24 weekers), lost one of their daughters, Georgia Mary, today. She would have been four weeks old Sunday. Things can change so quickly and we pray for their family to have comfort.

Day 20 Kangaroo Ma Ma

2007-04-05T06:33:00.000-07:00

Addy is making great progress with her feedings & oxygen levels. Her body temp is back to normal from yesterday's low readings.

She was doing well in the morning when we visited her so we got to do Kangaroo Care (http://www.brighamandwomens.org/newbornmedicine/patient/kangaroo.aspx) for an hour. Addy tolerated very well and when she started to fuss, she started to suck her thumb - check it out....

For those who were wondering what a bubble CPAP is, it's the apparatus on her little face in this picture helping her breathe.

Today's Stats:

From 5/29% early afternoon to 5/25% on the CPAP by 10pm
Only 1 apnea today
Feedings from 4.25cc/hr to 4.5cc/hr all tolerated, no residual
BMs are normal again
Body temps are better today
PIC Line removed (caused a little drop in weight to 1.9)

day 19 Dad holds Addy for 1st Time

2007-04-04T06:36:00.000-07:00

Adelina was having a good morning - probably because her Dad stopped in for a visit and got to hold her. The nurses took some pictures, so I'll be posting them later.
She also has weighed in at a whopping 1lb 10oz... here we grow Adelina! Her birth weight was 1lb 9oz. Our late night check in with her nurse reported that Adelina hadn't had any episodes of apnea/brady since Vince left the hospital in the afternoon :)

Today's Stats:

PIC line to be removed tomorrow if all goes well through the night
5 and 27% on the bubble CPAP, SpO2 in the mid 90s most of the day
IV removed from leg (from transfusion)
Feedings increased to 2.5cc/hr
Weight 1.10
Body temps a little low

Day 18 Adelina Recovers

2007-04-03T12:51:00.000-07:00

Adelina is recovering from a tough day yesterday... her belly swelling has gone down with the help of some medicine and a tube in her mouth to remove excess gas from her stomach. She received the remainder of her 2nd blood transfusion in the a/m (thanks cousin Als).

As of early afternoon, she was showing signs of her usual self (wiggling and moving around like a maniac). She seems more comfortable with the help of her treatments... though I like to give her the credit.

Today's Stats:

bubble CPAP breathing at 29% as of late afternoon

stomach/chest xray showed heart size normal, lungs show signs of RDS http://www.healthsystem.virginia.edu/uvahealth/peds_hrnewborn/hmd.cfm and the abdominal swelling was from distended bowels

feedings will restart in evening TBD by doctors

OG tube for stomach suction (removed by Adelina!) removed, OG feeding reinserted

IV from transfusion to remain until further notice

Apnea/Brady reduced after transfusion and reduction in stomach swelling

Day 17 Having a Bad Day

2007-04-03T07:28:00.000-07:00

Addy is clustering her apnea/brady episodes well over her daily limit in the morning. Her oxygen was increase to 35% for her to recover. Possible switch to nasal breathing tubes cancelled, but she was weaned back to 32% by late p/m.

Her belly has swelled 2cm larger overnight, which was causing her to take shallow/small breaths. She was given a diaretic through IV and a suction OG tube in her mouth to reduce the gas in her distended bowels. Feedings were ceased and scheduled PIC line removal was cancelled.

Blood work came back in the afternoon and Addy will require a blood transfusion (her 2nd) today and tomorrow. She may have been annoyed that she missed her sister's belated birthday cake?!

Day 16 Trying to Recover

2007-04-01T16:01:00.000-07:00

Adelina's CPAP pressure was lowered from 6 to 5 and weaned to 24% by p/m hours... she's breathing in the high 90s.

Feedings were increased to 3.75/hour (this is > 2/3 a full feed) so we hope she is able to tolerate the change. Only 3 episodes for the day and one she recovered on her own.

One day at a time...

Day 15 Doing Better

2007-03-31T15:56:00.000-07:00

Addy managed to lower her As & Bs today to three (all clustered in the a/m). Mom came to the rescue w/ a little kangaroo care for an hour and her breathing went back up to 95-100% the entire time.

Her blood work came back w/ no transfusion needed for now. CPAP still at 30%, but weaned to 29% by the afternoon.

Day 14 Not Having a Good Day

2007-03-30T15:52:00.000-07:00

Adelina was having quite the bad day... her CPAP was moved back up to 30% because of the large amount of As&Bs today. She has had over 10 for the day and isn't tolerating her care very well w/ drops in her O2.

Her skin color is a bit pale and may need a transfusion - tomorrow's blood work will let us know for sure. Her feedings have increased, so larger amounts of fluid in her belly may be making it harder to breathe. Let's hope she digests her food and feels better tomorrow if that's the case... otherwise, we'll wait for another solution.

Some 2 week birthday !

Day 13 Doing Better

2007-03-29T16:54:00.000-07:00

Today's Stats:

bubble CPAP turned down to 24%
Feedings to 1.5cc/hr in a/m and to be increased througout day
Apneas decreasing in frequency
Caffeine amount increased in IV (small amount)
Remains very alert and tolerating care

Day 12 Needs A Little Help

2007-03-28T16:50:00.000-07:00

Adelina is having a bit too many episodes and needed a small bolus of caffeine this morning. Her oxygen is now at 29% but her blood gases were good.

Feedings at 1.25/hour and hoping to increase to 1.5/hour by end of the day... we need to put some weight on her so her lungs can grow! Jaundice level is still low enough to keep her off of the lights (for now).

Dady 11 Bye Bye Ventilator

2007-03-27T16:40:00.000-07:00

I arrived just as they decided to take our little one off of the ventilator. It was the first time we saw her face w/o any contraptions! She looks just like her big sister, Sofia. Look at her getting real air for about 10 seconds...

Our nurse, Grace, thought it would be a great idea to do Kangaroo Care w/ Adelina if she did well for an hour or so on the CPAP at 25%... it was a go after lunch. 20 minutes w/ Mom breathing 90-100%.

She had minimal apnea at the end of the night and her tolerance for what she had gone through today was wonderful. Her feedings are still going well and she is digesting her residual when it is given back to her.

Day 10 Steady As She Goes

2007-03-26T16:36:00.000-07:00

Adelina is still doing well with her oxygen on the vent at 22% and minimal residual from her feedings. All of her old lines were switched out and she had a lot of bruising on her leg from the heel sticks (I was ready to punch someone). We're hoping tomorrow is CPAP time if she does well through the night... only 5 days on the vent!

Day 9 Shrinking Waist Line Tips

2007-03-25T16:13:00.000-07:00

Adelina needed a little help for constipation and her belly diameter went from 19cm to 16.5cm. Her feedings were changed to a continuous rate of .5cc/hour after a couple large BMs :0

Her vent was weaned to 22% - Hoping to see the CPAP again soon

Day 8 Dad's turn to Change a Diaper

2007-03-24T13:22:00.000-07:00

The albuterol in Addy's vent loosed a significant amount of phlem and she was breathing with much more ease. The vent was able to be lowered to 24% and she was tolerating all of her care well. Dad even got in there to change a diaper and take her temperature.

Her feedings were increased to 1cc/3 hours. She also was sleeping on her belly for the first time at the end of the day and man was she in dream land.

Vince's wedding ring is on her arm.................

Her survival rate also just went up by 80% today - she passed the one week mark.

Day 7 Happy 1 Week Birthday

2007-03-23T13:15:00.000-07:00

Adelina had 2 lines through her umbilical which were removed today. A PIC Line (peripherally inserted central catheter) was added in their place. http://en.wikipedia.org/wiki/PICC_line

Still on the vent and feedings of 1cc/6hours. Her chest had started to tighten, so albuterol was added in mist form through the ventilator. They hope this will loosen all of the "stuff" filling up in her lungs as they are creating new little "balloons" every day that can fill with phlem.