Annie Photo! Annie Photo!

Ok, so its only a camera phone shot, but its something...

Elly went to see Annie this morning. She's off her IV and will take her first bottle tonight. Elly is going to try to get back to the NICU in time to give it to her.

Steve

Holding steady!

The NICU has been especially busy this weekend. In the midst of all this, Steve and I have been able to hold our amazing little one and be so thankful that she is doing better. We pray that the other families are soon able to do the same. Annie is allmost on full feeds and should be off her iv fluids and antibotics by tomorrow. It's hard not to be haunted by what happened the last time she came off her antibotics (she got sick again so fast!). I know, it's silly, so we will stay grounded in reality and not our fears.

It's hard to believe that Annie has been in the NICU for over a month. During that time, we've made new friends among the other families, received countless emails and phone calls from friends and colleagues, and marveled at the knowledge and compassion of the NICU staff. Through them, and countless others, we have gained so much knowledge and strength. That, not our baseless fears, is our reality and we thank you all for that.

Annie's first mohawk

We had to move Annie's iv so now it's in her scalp. With all of the medical paraphinallia it really looks a little like a mohawk. We do have photo evidence but I have to say I don't think it's that flattering so we'll have to give it another try sometime soon (this definitely needs to be shared at her wedding!).

Annie went off the nasal canula (that tube they put in your nose w/O2) for about 2 days but it was reinserted last night. So now she has a mohawk and a nose ring. We have managed to continue to steer clear of CPAP which is just fine! She was also given a diaretic to help reduce her puffiness which seems to be working nicely. All in all, we are doing well and making progress. We'll keep rooting for her to master that breathing business and quit puffing up. In the meantime, we're far more concerned about the mohawk and the nose ring. I thought this could wait until the teen years!

Elly

Happy Month Day to YOOOUUU! Happy Month Day to YOOOUU!

Annie is one month old today (effective 10:45pm). In her one month of life, Annie has grown from 2lb 9 oz to over 4 lbs (give or take some excess fluids), fought 3 infections (2 staph, one endrocochal..[insert latin/medical sounds here to finish it off -just make sure you say them with a serious face]), had 3 spinal taps, 2 blood transfusions, learned how to breathe on her own, developed a preference for sleeping on her belly..the list goes on. She is our feisty Annie. And it is the strength of prayer and the love that every nurse, doctor, friend and family member gives to Annie that fuels this feistyness and allows us to push through each day with even greater hope for the next one.

Playing house

Today Elly was able to feed, change, and burp Annie. It was EMBARRASSING how clumsy I was! You would of thought I had never changed a diaper before (Luke would beg to differ). You can't imagine how wonderful it was to be able to do something so 'routine'. The old familiarity of changing a diaper coupled with the clumsiness and concern that comes from juggling such a little thing with all these bells and whistles (what I like to call all the iv lines and monitors) just produced a rush of emotions: confidence, fear, love, pride that I could finally do something more for her... it was such a rich, fulfilling moment and a sign of hope for what is to come when Annie is able to come home.

Our good luck charm

What a day! Annie has been breathing on her own, off CPAP, since 8am. This is just miraculous -we haven't been in a position this good for some time (we tried this a few days ago and she had to go back on CPAP after about 3 hours). This is such a huge accomplishment for Annie and I am confident that Kyung (ner nurse) has been standing over her all day commanding her to breathe and ordering her infection to go away. Kyung is a tough cookie (so is Annie) and we're grateful to her for being our good luck charm today!!

In other news, they got her new iv in in one stick (yeah, Monica!) and Annie is up to 13 ccs.

I know there will be other curve balls but boy is it nice to see Annie accomplishing something so huge. It's hard to fight these bugs when you are such a little thing but Annie seems to be kicking some bacteria butt.

Downsizing

Annie will have her central line removed today (one of her infections is in the central line). Unfortunately, they will have to rely on a peripheral IV which is, I hope I get this right, not entirely able to get the same level of supplemental nutrients into her. However, Annie seems to be allmost too plump right now so the docs aren't that concerned. Removing the line won't impact her antibiotics which is awesome. Annie is also taking larger and larger amounts of breast milk during her feeds (she is at 10ccs) and my milk can be fortified to help her out. Regardless, we would have done this anyway -the presence of the infection is just causing us to work a little faster.

Cycle on - Cycle off

So Annie will be spending more time with the scuba gear. The NICU angels are cycling her on and off CPAP every 2 hours. We'd hoped she would go cold turkey today, but little Annie isn't ready just yet. While she doesn't like the CPAP apparatus, Annie's willing to tolerate it for periods.

Speaking of little Annie, she's not so little anymore. We'll wait until all the measurements are done tomorrow to report new weight and length, but all that loose skin has tightened up and she looks like a proper plump little baby.

I know everyone is hungry for pictures. Looks like we lost the camera sometime over these last two weeks, so we'll have to go looking for another. I'll try to get at another camera-phone shot tomorrow and uploaded for all to see.

Steve

Happy Day!

3 lb party involving 3 lbs of cookies, bagels, and baby wipes was a huge success. Luke enjoyed playing with his cousin Sofia and showing off his shiner (Luke lost a battle with a balance beam in the playground). Stay tuned... next party will be a Double Ya Weight picnic. We will wait on Annie to tell us when that will be exactly.

Elly came to see Annie this evening and was met by a beautiful, alert baby not on CPAP. What a gift. Apparently, she is planning on being well enough to attend the next party. Her cultures have come back and she is battling 2 different infections. Not fun. However, she is being phased off of CPAP and her feeds are going up (she is up to 7ccs). It is such an enourmous relief to see her doing better. She's got a big fight in store against these nasty bugs but we have faith this will be behind us soon. Go Annie!!

Getting her feist back

Well, she's slowly coming out of it. Annie is indeed dealing with an infection that has popped up in two of her cultures. It looks like our old friend staph is back and SERIOUSLY overstaying their welcome. We will have confimation on that soon.

Yesterday, Annie was limp and just miserable. We've never seen her like this. Today, she is very sleepy, still on CPAP but back to kicking around, sucking on fingers and back on foods (4ccs). Gran was present and I am sure will offer more in her much missed "Grans Report".

So Annie is under strict orders to fight this nasty little intruder and GET STRONG.

It goes without saying (but still needs to be said) that the NICU STAFF ROCKS. We were so frightened yesterday and Annie (the bigger one), Theresa and Dr. E filled us with information, answered countless questions and took the most thorough, comprehensive care of our little girl. This is not a surprise (they always do that) but it means everything to us when Steve and I feel so helpless and afraid for Annie.

By the way, we're not kidding. We were serious. 3 lb party for Annie is occuring tomorrow at Gran's horse farm at 11am. All are welcome. If you need directions, let us know.

This sucks.

Our worries from last night continued today as we learned that Annie is (probably) dealing with another infection. She had just gotten off of her antibotics yesterday from the last infection so to have her get so sick so quickly has been hard. Last night, she has having so many episodes that she was placed, for the first time, on CPAP. This is a device that is inserted into her nose and injects air into lungs. It doesn't breathe for her but it does give her a pretty serious kick in the right direction. This has been very hard for us since we have never seen her so sick and lethargic.

So we are waiting to her back if this is an infection and who it is. In the meantime, Annie will receive a blood transfusion today (Dada rocks!), be off food, on CPAP, and under strict orders to get better and stop scaring us.

Sorry to say that Anne is not doing as well tonight; she's lethargic and having more Apnea lapses. The NICU staff think she has another infection. They've taken more blood and another spinal tap to check for certain and she's back on her antibiotic cocktail.

We went through this a few days ago and Annie fought through just fine. Seems somehow more distressing now, but we're sure our feisty little girl will repeat her strong performance.

Thank you all very much for your thoughts and prayers. If you don't mind, we'd like to ask for one more round.

Go blue!

Elly met Annie's new neonatologist today (they rotate -apparently dealing with Elly can be very tiring) and, great news, he is a Michigan alum! Annie has been increasingly active and practicing field goal kicks in anticipation of his arrival.

Annie's previous neonatologist still visits and checks in on her. We just adore her; particularly her patience and ability to speak to overly anxious non-medically trained parents. That being said, her real talent lies in managing Elly when she makes the mistake of looking up things on the internet. This, by the way, is the cardinal rule of having a preemie in the NICU --READ NOTHING (especially when it's 10 years out of date).

3 POUND PARTY!!!!

Attention! Attention! We have hit 3 lbs! Serious stuff first: God bless all of the saints in the NICU who have done what we can/could never do. We have shared our little girl with you and you have plumped her up, fought infections, and done countless more than we can truly appreciate (especially given that fact that our famliarity with medicine is based on House and Grey's Anatomy). We know we are nowhere near the end of the road, but we are so thankful to have all of you taking care of our Annie.

Allright, enough of the syrupy stuff. Time to celebrate. There will be a 3 lb party in honor of Annie on Saturday at 11am at our pad and all are invited. No need to bring anything but, if you do, bring 3 lbs of it. Steve is threatening to eat a 48 ounce steak. So gross. Please reply to this post if you can attend and we will take it from there.

Happy Dada Day!

Now you might think this photo looks strangely similar to the last one BUT it is all part of a super fantabulous Dada Day. Steve held Annie for the first time and took this picture (that's Steve in the light blue t-shirt)! Steve has been under the weather for so long that we were all a little cautious about germs...until today! Other highlights of our super fatabulous day included playground hopping with Luke, burgers and beer at our fav outdoor cafe and... Luke was able to meet Annie!! Annie (the grown-up) held Annie (the preemie) up for Luke to see. It was incredible and Luke was truly blown away when she waved at him. Luke has now expressed that he is very happy for Annie to come home and play when she is bigger (however, he will not be sharing his toys).

As for Annie, she is being fantasically boring. She is up to 5ccs, episodes continue to be down, and she is starting to act like a real baby (crying when she is hungry, sucking like a pro on her pacifier, asking to stay out late..). Tomorrow is her 'spa day' when she is weighed and all the blood work is done. We look forward to that being uneventful!

Love to all -but especially the Dadas/male role models of the world.

3 cc's every 3 hours

So little Annie has had another good day of breathing, sleeping, and eating. She's increased her appetite, now eating 3 cc's of milk every 3 hours. That plus her energy drink and fat intake and she's somewhere around 100 calories a day right now. She's still small, but this photo taken by Elly this morning show's Annie is starting plump a little and look like a proper baby (please note the 'Burke cheeks' in effect).

Ho hum (yawn)

Sorry, folks, but no scary news today. Annie's food has been increased to 2ccs ev 3 hours. She is still on oxygen but having less episodes. We continue to keep an eye on her spinal tap (or 'CSF'..I think) and -so far- it is very boring and uneventful (the white blood cells heard your call). It was nice to have such a 'boring' day. Elly's visit to the NICU was just spent enjoying everyone's company -from Annie to the staff. How nice to not be spending time glaring at the monitor willing it to stabilize every time the alarm goes off. Momma and Dadda are definitely running on fumes so it's nice to know that we will sleep well tonight. As always, love to you all.

Poop Happens

Woo-hoo. Annie pooped. She had been holding off for a while and we were very carefully NOT thinking about the possibility that she was developing any GI problems. Fortunately, the big elephant in the room has been asked to leave. Poop happened. Unfortunately, Deborah got stuck with the diaper change. Sorry!

Annie continues to test our patience and have some dips in her breathing and heart rate so last night she was placed on oxygen. Obviously, these bumps along the road are alarming to Steve and I but the NICU staff is wonderful at acquainting us with the idiosyncracies of premature babies (apparently they don't follow directions well).

The NICU now seems to be aware of the fact that Elly has a bizarre sense of humor and seem to be coping nicely. God bless 'em.

Make A Difference

A number of you have been kind enough to ask about gifts for Annie. While we so appreciate your kindness and generosity, it has become clear to us that what is really needed is to ensure that NICU's like Lenox Hill continue to offer the quailty of care that Annie has been so blessed to receive. Rather than a registry, we would instead like to request that you make donations in Annie's honor to the Jacqueline Fein Feiner Fund at Lenox Hill Hospital. Donations go directly to the NICU and can be made by writing a check to the Jacqueline Fein Feiner Fund and mailing it to:

Armando E. Grassi, M.D.
Chairman, Department of Pediatrics
100 E. 77th Street
New York, NY 10025

By doing so we thank you for supporting Annie while honoring and preserving the good work that all the doctors and nurses have done for her and so many other children.

In lieu of a donation, you might also want to consider giving blood to the Red Cross. We all know about the blood shortage and it was through the benefit of a blood transfusion that Annie has continued to improve. More information at: https://www.givelife.org/index_flash.cfm?&gclid=COujtbKf6pMCFQo2GgodQlXvVQ

Time to make a difference for all the other little Annie's that are out there!

The Power of One

So Annie had her spinal tap (I think it's called a CFC) come back with one lousy white blood cell. Since no white blood cells are supposed to be hanging out in her spinal fluid we are hoping the little guy will get lost and, unfortunately, need to run another spinal tap to confirm that all white blood cells have gone back to where they belong (i.e. in her blood, not her spinal fluid). So, poor Annie will get poked again today. Good news is Annie (the nurse) is doing the poking and has assured Elly she is good at her job. So, everyone direct your energy at this white blood cell and tell it (and any of its friends) to get out of her spinal fluid.

On the road again

So Annie has had a good 24 hour period and we are (cautiously) breathing a sigh of relief. She is back on food (1cc ev 6 hours) and the antibotics seem to be doing their job. Elly went to see her this am and she was just amazingly alert and attentive. Steve saw her last night and witnessed her bath (she hates them as much as her brother did when he was a baby).

Best of all, Annie is gaining weight! She is 2 lbs 12 oz and it seems to be 'real' weight (not fluids). Stay tuned.. we have decied to throw a 3lb party when she hits that mark. This is your 4 oz warning!

We are all hanging in there and we do so thanks to all of you!

@#%! Bacteria

Well, we know who the enemy is. Annie has developed a staph infection which is what caused the worry earlier this week. The good news is that this infection is really common and they started treating her for it on the antibotic cocktail they introduced earlier this week. What has been hard is that, as a result of this, she has had to have a blood tranfusion (thank you, Dadda, for your kind donation) and a second spinal tap. It's so hard to authorize these things that cause her pain. The doctors and nurses have been wonderfully patient with us and responded to every little question and we continue to be so thankful for the amazing care that she is receiving. Keep the prayers and appeals to higher powers coming -we can never express how much your support and prayers keep us ALL going.

Lovely Annie

Gran Report

Yesterday Gran got to visit Annie (along with Annie's Mom, of course) and it was wonderful. I think we all regard hospitals, especially CCUs as busy, intrusive places, but you would be amazed at how peaceful and calming it can be to sit beside a new, little granddaughter and watch her sleep -- even with a few tubes in the way. Annie was having a much improved day and that made everyone happy. After a bit, she even woke up so Mom could hold her and Gran could admire those wonderful blue eyes. We also had wonderful reassuring talks with the neonatologist and the nurses. It is so good to meet the amazing, caring angels God has sent for our little girl.

And now for the small world, you won't believe this bit -- as Gran talked with the two nurses in Annie's area, she discovered that both of them had ridden and competed in their earlier days. One nurse even showed us pictures of her first horse. If Gran needed a personal omen, that "all will be well", it was finding that horse people are truly everywhere, even caring for her precious Granddaughter.

Curve balls

Annie was struggling a bit this morning and forgetting to breathe which caused her heart rate to drop. Fortunately, Elly was on her way to the hospital when they called and was able to talk to the doctor right away. As always, the staff there was incredible and explained that they are giving her a antibiotic cocktail to fight any possible infection (preliminary blood tests have come back ok). This may also be the result of reflux. So Annie is off food for a little while but still having her energy drink and fat. Elly came back to check on her this evening and found her all cuddled up in her shoe. She continues to breathe without assistance and we pray we overcome this little bump soon!

Latest pictures - Annie in a shoe

Elly took more pictures last night. This is Annie in what looks like a shoe; its to make her more comfortable and she does seem to like it.

Non-emergent

Annie was supposed to have her head sono today (they routinely check for bleeding) but it was postponed bc she is "non-emergent". How happy we were to hear that our daughter is becoming increasingly uneventful for the NICU staff! She is eating more -2ccs every 3 hours. Part of her 'diet' includes a large portion of fat that comes through her feeding tube. Poor Annie -all the fat and none of the taste! If only we could give her ice cream and french fries. She has lost weight (5 grams) which is to be expected so we are eager to see her gain weight soon. Pics coming tomorrow (someone with photo savvy needs to help!).

Daily gifts

Annie is eating more (every 3 hours) which continues to be a good sign. She is scheduled for a sono of her brain tomorrow and we pray that her second one is as uneventful as the first. Her lights are back on to ward off jaundice and she seems to love basking in the 'sun'. I came to see her this afternoon and she was just so peaceful resting under the lights. I held her hand for ages and just marveled at how much peace and love exists during such a simple moment. Later, I got to hold her kangaroo style for a while. It allows her to hear my heart beating and clearly was very relaxing for her (not to mention me). It is these moments that are so special -a gift- and a reminder of what a blessing this feisty little one is. Love to everyone, Elly

More pictures soon -promise!

Oceans of blue!

Annie is doing well and they have added an additional feeding to her day (she now eats a very small amount of breast milk 3x a day). Today Elly was able to hold her for a while and she kept trying to open her eyes. One of the nurses figured out that she was bother by all the lights. We dimmed them and she spent quite a while open and closing her eyes and staring at her momma! Her sight is very poor at this stage in her developement but to see those beautiful blue eyes was so deeply touching. She's tiny but she's got spirit and spunk! Love to everyone, keep those prayers coming!