Happy Christmas Eve

Yeah, Annie rolled over!

Jesus is born!

Life is good.

Year End Report

Couple of updates, Annie is not so little. She is 16lbs, 7 ounces. Humongo. With adorable chubby cheeks to prove it. We went back to her (ahem, AWESOME) pediatrician last week and, for the SECOND time, in three months, her lungs and breathing were clear (so..imagine how many times they have not been clear). What a blessing to face the holidays knowing that she is getting stronger every day. Yes, this year was and next year will certainly be hard. But Annie continually proves to us just how tough, loving, and joyful she is. I also need to stress the joyful part. This girl loves to laugh. Despite having a mask over her face (she breathes in her medicine), Annie always takes a moment to look up and smile at us. There is so much to learn from this little soul. Let's be honest, she has spent more days sick or struggling to breathe then she has healthy in these months that she has been with us. Yet, Annie does not count the days. If anyone lives in the light and love of those around her, it's Annie. God bless her and God bless all of you for the strength and love that you continually send us.

So, on to the family footage! Annie loves to pull Luke's hair. And Luke, who is one of the most compasstionate, caring people I know, happily offers up his hair to her!

BTW, the photo on top is a familiar sight around our house. When Annie is having trouble sleeping bc she is coughing so badly, she is somehow always able to sleep on Daddy's chest. I can't begin to count how many nights I have caught the two of them on the couch!

ROR

We hit the pumlonologist last week and Annie definitely did much better than last time! She even aced to O2 check and got her highest reading ever --100%! No one is overly concerned about the wheezing (she can grow out of that) the problem is the coughing/gagging/schtick that she likes to put us though. We are starting to very slowly decrease her steroid level and see how she responds. Otherwise, we will stay on top of her with the other medication that keeps her airway relaxed/open/happy (whatever the appropriate term is for it).

In other news, we had our first family photos taken around our xmas tree this weekend. I am so excited to see them. It's the first time Annie has been healthy that we have gotten some pictures all together! I also have a hysterical video of Luke and Annie that I will have to share with everyone.

More to come!

Babytism!

Sorry to take so long to post but, while Annie is doing better, Steve and I are sick!! [insert collective sigh of sympathy here]

This weekend, Annie had her Baptism at Church of the Ascenscion (our neighborhood parish). For those of you who know us Catholics, waiting 6 months is like waiting an eternity but Annie's health didn't really allow us another opportunity. Annie was sick with an ear infection and it was looking a little shaky for a while but we decided to move forward. What a blessing that we did. I can't tell you what a magical day that was for all of us. Our dear friend Father Valenti came in for the ceremony. I allmost burst out crying when I realized that Annie was finally big and strong and, perhaps most importantly, I was releasing her to God's care. There was an incredibly pervasive feeling of calm, strength and love from everyone there. We are so thankful for the friends and family that came that day and for the countless others who we know were thinking of us. Love to everyone.

Annie hits the pulmonologist tomorrow so...more to come... but, for now, I thought you would enjoy hearing about this wonderful day.

Annie goes vegan!

Yes, she's sick again. No surprise but we are so thankful that we had a week and a half of healthy Annie. Today Elly talked with her pulmonologist and her pediatrician and we are going to try putting her on a new formula that has no milk (not even soy). It appears as though Elly the vegetarian is having an influence! It's a bit of a shot in the dark but it's not another scary drug so we try. We see the pediatrician tomorrow and the pulmonologist next week --more to come.

Good times..

So, Luke managed to come down with a massive ear infection. But we had a wonderful Thanksgiving with our family and continue to enjoy the blessings of Annie's good health. Last night Steve and I were able to spend a good hour just laughing and smiling with Annie. What a treat.

Whew

Annie is finally doing better. We are starting to be able to space out her meds a bit and, hopefully, she will stay well long enough for us to drop down the dose on her steroids. She is on a lot of meds to keep her breathing under control and it would just be so wonderful to tone it down a bit. That being said, these meds have kept her out of the hospital and from getting worse so I won't complain too much! It's going to be a long winter -we all just wish we could put Annie in a bubble- but we will get through. Steve and I are just so thankful to have access to such wonderful care. Have a wonderful Thanksgiving everyone -I know we will.

Escape!

Today we took Annie to the pulminologist at Columbia. Initially, I had been told we couldn't get in until Jan but Annie's pediatrician again worked her magic and got her in within 48 hours. Whew. I had allot banked on this visit. I was hoping for a miracle. While we were there, Annie did her whole gagging/coughing/vomiting shtick. This was very concerning to them and we decided (begrudgingly) to admit her to the hospital. Fortunately, we agreed to wait a few hours to see if she had another episode and, thankfully, she didn't. I am so thankful that the staff there was not dismissive of my concerns for Annie as her mom. I'm not a doc, although I do think I have reached the point where I can play one on TV, but I appreciate them giving credibility to my own opinion on Annie's care. So they allowed me to sneak out the back door and take Annie home as long as I promised to come back the next day. Whew.

Definitely a long day but Steve and I continue to be of the opinion that as long as we can provide comparable care for her at home, then home is where she should be. Fortunately, Annie's pediatrician is of the same opinion and has gone out of her way to offer her support. Including late night phone calls making sure we are all hanging in there! I truly wish for everyone who faces these struggles that they have the gift of a pediatrician who is such a strong ally, professional, and friend.

So quick summary: Annie and Elly ran away from the hospital. If you see any pulminologists walking the streets looking for us ---you know nothing!

Tough times

These past two days were rough for Annie. She is again struggling with her breathing, the meds seem to only be taking the edge off and last night she developed a fever. It's hard to stay strong at times like these. Sometimes it's just too easy to dispair and get caught up in how much she has struggled in these past few months -certainly more then I can imagine I have in all my years. Yet, Annie chooses to smile, laugh and enjoy life. So we will follow her example and step away from the allmost too easy choice of dispairing or blaming myself for not giving this little gal a better shot. It's hard and we're certainly not perfect. In all of this, it is Annie who continues to be our strength. God knows if she can make it through and still laugh at us then we can certainly stop feeling sorry for ourselves.

So, we are off to the pulmonologist. Fortunately, the leading folks seem to be at Columbia so I (Elly) can walk in the front door without any concerns of misplaced loyalties (those NYU visits were tough). We'll keep you posted. I just hope we can find the tools to make Annie more comfortable.

We also learned today that Annie's old buddy Jaeden is in the hospital overnight tonight. Looks like we are not the only ones needing some support -please include Jaeden and his family in your thoughts and prayers.

We just need to get through this @#^%@ flu/cold season!!!!

Time to laugh

It took some doing but here it is...


BTW, that whistling sound you here in the background is Annie breathing. Yeah, we haven't quite kicked that yet but, as you can see, Annie is still in good spirits!

Thank God.

It looks like Annie is on the road to recovery. After her test on Thursday, she seemed a little better and she seems to only be improving. She is still wheezing and coughing but it doesn't consume every little bit of her body like it has these past 2+ weeks. We are continuing with the steroids and asthma treatments and will hope she continues to improve.

It's a lot of work (I feel our home has enough medication to stock a rural clinic somewhere) but we have worked closely with her pediatrician to keep her out of the hospital and I so grateful for that. Annie has also done anoble job breathing well enough to keep her O2 levels high and gaining weight (she is 14 lbs!!) throughout all of this.

If she continues to improve it seems like we have ruled out Annie having anything that is anatomically off (i.e. a growth somewhere that's interfering with her breathing). What this does mean is that when Luke gets a cold or there is a bug out there, Annie may get sick like this again. So, it's going to be a long winter with us doing our best to stay away from germs and keep her healthy. At least now we have the tools and a little more knowledge then when we started on this scary ride a few weeks ago. We'll continue to keep you posted!

Annie has started really laughing and smiling. I'm working on getting some video to put on the web for everyone to enjoy!

Luke Concert for Annie

Time to oooh and aaah

Tickers, Barium, and traitors oh my!

We have been spending quite a bit of time at NYU for testing (since Elly works at Columbia we have had to enter the hospital in disguise lest we be associated with our city rival!). There facilities are really phenomanal and we have been very fortunate with the level of care that we have received. Annie's pediatrician is also amazing since prior to our appt she calls, finds out who the leading guru is, speaks with them, and gets us an appt within 24 hours. If only my salon was that available!

The good news is that we have been able to rule out a virus in Annie's heart (via an echo) and her airway is clear so there is no obstruction (she got to drink a bottle of barium and we watched it travel down via xray). Annie is still wheezing so we are not sure why this is continuing but she does sound much better today. I so hope this is a sign of improvement. Tomorrow we check back in with her doc to see where we go from here (probably to a pulminologist).

Candy bars and mac n cheese

Well, I'm 4 mini candy bars in and I'm ready to talk. I spoke with Annie's doc today who thinks we need to take it up a level and screen some things out. It's been 2 weeks and she just doesn't seem to be making substantial improvment. Annie's going to have an echo cardiogram to screen for a virus in her heart and an ENT specialist is going to stick a tube down her nose to see if anything is blocking her airway. So I've started eating candy and I'm heating up some mac and cheese. Want to join me?

Day 12

We took Annie back in today to see if there is anything more that we can do to make things more comfortable for her. She is wheezing so badly that the doctor was surprised her O2 rates were as high as they were (97%). Apparently, he was not up to speed on Feisty Annie's toughness and the pact that we have to keep her out of the hospital!

I think a fair summary is that we are surprised she is struggling this long when she has the boost of synagis in her system. We're not entirely sure what to do so we are doubling up on the steroids and asthma medicine while changing her antibiotics.

On a nicer note, the awesome people I work with threw a wonderful shower for Annie on Thursday. Sadly, she slept through it but it was so lovely to again feel all that support for Annie and our family from my friends and colleagues. In lieu of gifts, we asked people to contribute to Annie's fund at the March of Dimes (http://www.marchofdimes.com/prematurity/b.asp?band_id=44620). I'm so happy to say that some much needed funds were raised in Annie's honor. Thanks so much, everyone!

We owe everyone some photos which I will try to post in the next day. While we have been very concerned about Annie we had a very happy halloween and some wonderful times together as a family that we would like to share with everyone!

Still breathing

Just a quick update since the last few days have been a bit of a fog. Annie went in today for a chest xray to rule out pneumonia. It looks ok but we are treating for pneumonia nonetheless and just dropped off a persription for some tough antibotics. It's been 9 long days. I can't imagine what it must be like to struggle to get a good breath for that long. Annie, however, is as tough as they come and has kept up her smiling and cooing. We are hoping for a quick recovery!

Breathe in, breathe out

There is this song that begins with this chanting of 'breathe in, breathe out'. At times, as we've faced infections with Annie, practiced taking her off of CPAP, and now, when her breathing is raggedy and scary, I keep thinking of this little chant. The past few days have been scary as Annie has struggled to breathe comfortably. We've put her on steroids (she's on 2 different ones) and are working hard to keep her out of the hospital. So far, her O2 levels are awesome so we've been able to manage her care at home along with frequent visits to her doctor (who is the awesomist). I think Annie's biggest challenge is she has something called muscous plugs in her chest. We've all had them (yes, even you dear reader) but we have the ability to hack them up. Annie doesn't. So we need to pound on her back to break them up while giving her the meds we have to help her lungs relax and stop wheezing.

We've made this a family effort: Luke turns on her nebulizer (it steams like a choo choo = cool); Steve holds her upright so she doesn't make herself vomit with all the coughing and I nag everyone and read scary articles that I shouldn't be reading.

So, it's been a tough road but we will persevere. Annie is the toughest of us all -she still manages to look up at us and smile while she is getting her treatments. There is nothing I want more than for this little one to be cut a break. But, if we have to go through this, then I am so thankful that we have such wonderful family and medical care to allow us to give this little girl every resource available. We'll make it through, it's just going to take a little while.

Raising a super hero

So Annie went her for her check-in appt at Lenox Hill. It was so wonderful to see her doctors and nurses who ran around calling her 'fat' (yes, fat is a compliment in a NICU of itty bitty babies!). We got to meet up with our buddy and former roomie Jaeden who is doing so well Elly barely recognized him!

Annie is doing great and seems to be experiencing issues that are typical for a preemie. We need to step in and be her masseuse by including more massage in her day and focus on her legs and neck where she is particularly tense at this point.

The stressful part began when, during the appointment, we all realized that Annie was wheezing pretty heavily. Her pediatrician was amazing and saw her right away. Annie's breathing was tight, she was given a nebulizer treatment and we were given a nebulizer to take home and have been treating her every four hours. Poor thing. I just hate that she is on more medication but it's making a tremendous difference and her breathing is improving.

Just when we think that is under control, I noticed some bruising on Annie that is troubling. I've spoken with her pediatrician and we are taking her in tomorrow for some blood work to get to the bottom of this. More tests and doctor's visits.

There are many lessons in the past 24 hours. We are all having to learn to be more attentive to her while accepting (and embracing!) the fact that she is a big girl now. Our NICU days are gone, but a small cough or cold can quickly become some labored breathing that requires a little more attention than we are used to. Luke will have a sniffle and we bring out the tissues. With Annie, we bring out the synagist and nebulizer. She is our super hero who has overcome so much but even super heros need to be on the look out for kryptonite.

Thankfully, the miracles of modern medicine and the gift of a wonderful, caring pediatrician allow us to act fast and provide much of this care at home. We are determined to stay out of the hospital!!

Love to everyone!!!

Annie update

Annie is now just shy of 12 pounds!! She's offically in 3 month gear and truly thriving. She is even starting to hit the charts of a 'normal' 4 month old baby. I just love the stats: height is around 5%, weight 15%, head 25%. Wow, is that one Daugherty size head. Apparently, the well roundedness of her head is a great thing for a preemie (not sure why). We did find out at her doc visit that she has thrush (and I thought her tongue was milky from all of the formula!) so she is on some medication for that. One more dose to juggle...

We are so thankfull that Annie got started on synagist (sp?) early. It is really keeping her healthy despite the presence of her brother/really cute germ. Luke just loves to give her kisses and hugs and lecture us on how to take appropriate care of his 'Ana'.

Here are some photos taken during Labor Day weekend...yes, I know, it's currently October... Enjoy!

4 month bday!

Annie turned 4 months this weekend. She welcomed her 4 month-day weighing in at 10 LBS and celebrated at our family summer place with Aunt Kit and Uncle Nate. Unfortunately, Annie is battling a cold and is has been very hard for her to keep her food down. After a rough night, we have found that we can avoid chronic vomiting if we feed her an ounce at a time. It takes a while, but it is a relief to see her keeping some food down.

The million dollar baby

Well, thank God for insurance. Annie's medical bills are starting to come in and we have already topped 100k. The girl knows how to spend money! Fortunately, our health insurance is quite comprehensive and we are comfortably covered. I share this with you because the nature of our health care system does not leave every family in a similar feeling of comfort. I can't imagine how families would survive this enourmous medical bills without insurance. This is an election year, folks. There are a lot of families out there who need the government to step up and provide adequate support in times of medical emergency. Do your homework and don't forget to vote!

Miracle Grow!

We had our check up with the pediatrician today and were shocked to find that she is up to 8lbs 2 oz!! Finally, after 3 long months she is the size of a term baby. It is just amazing to look at her and see such a healthy baby. What is hard is realizing we are just entering this phase now..at 3 months. It was hard to be asked developmental questions today and respond that she is just not there yet. Don't worry, we are all ok and have not lost sight of the real truth: this little one is our hero. She has been through so much in the past 3 months. Taking a little while to offically smile or hold her head up is fine with us.

Annie will have her early intervention assessment by the staff at Lenox Hill next month. We'll see where she is then. In the meantime, Luke has a birthday next week and starts school tomorrow. Annie has some BIG PLANS. Pics to follow.

Feisty toughens up

Annie is just doing so well and was offically discharged by her visiting nurse today! She is developing so quickly it's hard to keep up. She is grabbing at her bottle, batting at toys on her gym and trying to hold her head up. She actually FITS into newborn clothes now. Luke continues to just adore Annie. She gives him little kisses and grabs at his hands which leaves him elated and running in circles. When Luke wakes up in the morning, he goes straight to her saying. "Annie! Annie".

How did we get so lucky?

We see the doctor again next week - more later!

Coming up for air

I'm very sorry to share that Annie's Aunt Sherry (Steve's sister) passed away very suddenly last week. This is naturally very hard on Steve's family but I am so glad that we were all able to go as a family to attend the funeral. Annie was cleared to fly and, along with Luke, added (I hope) a little bit of warmth to a very difficult time for Steve's side of the family. Luke was the designated 'hugger' -a role he took quite seriously and accidentally knocked down Grandma. Annie was designated cute baby. They both did their jobs quite well.

On a happier note, Annie has gained almost a pound since she came home! She is now 6lbs, 4oz and eating like a crazy lady. It is such a joy to have her home, loved by all of us (especially Luke!) and growing big and strong. Yeah, Annie!!

See you at 2, baby!

Annie went to see the eye doctor today for her final screening for ROP (retinography of prematurity (I think)). She passed and is now free of these horrifying eye exams! She doesn't need to come back until she is 2! This is wonderful news and one more thing to check off the list as Annie exits the world of high maintenance preemie and enters the world of high maintenance newborn. We see the pediatrician on Fri -more then!

Haven't screwed up yet!

Annie met her pediatrician, Dr Cosme (who rocks!!), today! It appears as though we have not screwed up. Her weight is steady and she is offically considered a newborn (well, a very old newborn).

Today, Elly did 2 trips to the dr since Luke is still not better. Now his eye is all swollen and red and he is still running a pretty impressive fever (what next?!??!). So we got some antibotics and hope the little guy feels better soon. Annie, thankfully, is not showing signs. I have to say it is a real fear for us since in the past her cue that she has been ill has been an apnea episode. Fears aside, she is just thriving and we will keep washing hands and gently trying to keep them apart (which is tough bc Luke adores her!).

Aunt Kit came yesterday and took these photos. Above is our beautiful Annie and, well, our sick Luke.

Parenting two..

So Luke is now sick with some nasty virus. Taking care of Luke and keeping Annie healthy when you have a 1000 square feet is a whole new type of challenge faced by us New Yorkers. We've essentially designated a parent per kid so as not to cross-contaminate. Steve and I were both up most of the night.
Annie has virtually all of her appointments set for follow-up -definitely wanted to set those up before the sleep deprivation kicked in! She is getting her eyes examined and will receive early intervention in case of any developmental delays. Tomorrow the visiting nurse is coming. I think we scared her off today when we mentioned how sick Luke was. On Thursday, Annie meets her pediatrician (who we adore). We were hoping to see her doc sooner but so far we haven't screwed up!

Luke and Annie

We wanted to share this moment of Luke and Annie together. Luke just adores her! Right now, however, he is running a fever of 105 so everyone please send Luke your well wishes and pray that those bugs stay away from Annie. Enjoy the video!

August 1: Annie has left the building!!!!

There just aren't words to describe the joy we felt when Ellen (red head with Elly) called to let us know that Annie can come home..now, right now. Then, as the cherry on top, Dr. Navez had read her test and signed off on her being discharged. Dr. Navez was on when was admitted and gently introduced us to the NICU when we felt so lost and afraid. It was only fitting that she would discharge us. I secretly think that Annie was holding off until she came back from vacation.

After hearing the news, I/Elly honestly spent most of the day crying. Those tears said so much to me. Mostly I cried out of gratitude. We are so grateful for these angels who entered our life and saved our little girl. I remember being in the hospital and asking the preinatologist what her chances of survival were. Now she is sleeping in her bouncy seat while the cat pokes at her. I cried because I don't think I realized how much I had been holding my breath for the last 9+ weeks. Now I can breathe.

Dr. Wenger is our rock. She held me together on so many occasions that I can't begin to describe the strength she gave us. I remember when she entered the room after Annie decided it was time to come. I was so scared and just wanted to burst out in tears out of relief that she was there to take care of me (I'm not so good with letting people take care of me..). Then Annie came..not an hour after I realized these contractions were real. I was thrilled to hear her cry but frightened at how small she was.

Then I handed her over -this tiny precious thing- to perfect strangers. Strangers who knew what they were doing but seemed to talk in some strange foreign language. It was as if I took this helpless little one and dropped her off in a foreign country where I didn't even speak the language. So, they taught me. I read, I listened, I learned medical latin and they taught me that Annie was a special little girl who was going to make it and that I was not helpless (please note that Annie just did her 'power to the preemies' fist in the air thing from her bouncy seat that my NICU buddies are so familiar with).

Steve and I will never be able to convey how special this NICU family has become to us. The nurses and doctors who were so patient with us and held us together through so many scary times. We cannot forget all the other parents who we befriended along the way. It was thrilling to us that Kingston left the same day but we are sad to leave so many of our friends behind. We need to give a very special hug to Carmen, Jaeden and Artie who posted a prayer for Annie and her friends on their blog the day before Annie was released. You can't tell me that didn't work!

Finally, YOU. I have no idea how many people read this blog but I know the Annie, Steve, Luke and I were powered through every moment by the prayers and support that our friends, families, colleagues and even strangers offered every day.

Annie's story/blog will continue. Feisty Little Annie and her friends grows every day. It is our hope that through Annie's ongoing story we can share that prematurity happens; tiny babies are born well before their time but they MAKE it --with flying colors! Please don't feel alone and scared -we are here and happy to talk!

HALLELUJAH!!!

Gran is thrilled to be able to tell you that Elly and Steve just got the call that Annie can come home right now! She really aced the breathing test (only one of her many accomplishments, I'm sure). In fact, she did so well that she won't even need a monitor. Dr. Navez, her very first doctor in the NICCU, signed the ok, so Annie has truly come full circle.

I have it on good authority, however, that this will not be the end of the blog. Elly and Steve (and probably even Gran) will continue to keep you updated on Annie and friends. And we sure better here from Jaeden and Kingston so we can keep planning that birthday party at Gran's farm.

Our hearts so full of joy and thanksgiving and gratitude to all the loving hands who held and cared for Annie over these weeks and months. God bless and keep all of you.

Rumours abound!

We got a call from the visiting nurses indicating Annie was scheduled to come home tomorrow. However, we haven't been offically been told this by the NICU staff so we will remain cautiously optimistic (we've been here before and the disappointment is just too much!). Annie is just looking terrific so, whether or not it's tomorrow, we know it will be soon. Elly has been organizing and reorganzing Annie's things and cleaning little baby clothes. We have all been enjoying the idea of having her home soon!

Take 2

Sorry for not posting yesterday -Elly passed out. Annie is doing well. We are trying the breathing test (which she failed 2 weeks ago) again starting this afternoon. It's a 24 hour exam, then they have to read it BUT if she passes she gets to go home. Since we refuse to ride the NICU roller coster and get all excited, we won't believe it until we pass the security desk. Stay tuned and keep your fingers crossed.

Also, please keep two of Annie's friends who had surgery yesterday in your prayers. We are hoping they get well very soon. Plans for a break have been postponed until all are feeling better. However, following Aunt Kit's suggestion, burp clothes have been starting to mysteriously disapear..

Holding steady

Annie was very lively this morning and eager to have her bottle. Apparently, Elly showed up JUST IN TIME. Annie is not so good with the whole patience thing. She lays/sleep pretty quietly until she realizes it's time to eat and then, well, someone better act fast. She really seems to be coming back from the weekend and we are looking forward to getting back on track with getting her home!

5 lbs, baby!

We did it! We hit the 5lb mark! Annie is eating much better today and is getting back to her old self. Whew. Annie is now focusing her attention on her break from the NICU. We have begun talks with Kingston and our plan is to accumulate burp clothes, tie them together, and go out the window. It is 6 floors up and the nurses are on top of things so this may take a few days. Jaeden is recovering right now so Annie plans to strap him to her back. Should be fine if Kingston spots her on the way down. The twins are on their own.

The Long(er) Goodbye

So, it's offical. Annie is in for another week. She is doing better today but still having some challenges when she is eating. I have figured it out though. Jaeden is the littlest one around but seems to be in charge of who is coming and going. I firmly believe that we are not allowed to leave until Jaeden is ready and, well, he is in charge. Yes, it's true, Annie's freedom is in the hands of an itty bitty baby. Whoever thinks preemies aren't the boss of us full grown people is nuts.

So, now that our good-bye is a little longer, we will resume our thanks to all those wonderful souls who have been taking care of Annie.



"Breathe, Annie. Breathe, Annie". This is what I think of when I think of Theresa (she is on the left). She took care of Annie on one of her sickest days when she was fighting her second round of infection. She was on CPAP and Theresa had to take her off for a second and, quite simply, willed her to be well. I just remember thinking that, on such a scary day for us, I was glad to have Theresa taking care of Annie.

In the middle is Dorie, she is our new buddy who takes care of our wee ones in the step down room. She's very laid back and fun to have around but always on top of things with Annie. We were having a tough time with Annie's feeding today (it's alot of work for Annie) and Dori was gently coaching us along throughout (and making sure we didn't screw up!).

Jenny (on the right) helped me get through giving Annie her first bottle! I was all thumbs and Jenny just chatted away while we got Annie fed. She is such a warm and caring person.. only to find out she is Mom to three young boys. It's just not possible to have someone that sleep deprived be so nice!

Finally, in the middle is our buddy and fellow horse enthusiast Taryn. Taryn is heading off to Cali soon and I know I speak for many of us in saying that we will miss seeing her around the NICU. As for us, Taryn was the nurse who put Annie in my arms for the first time. I was so scared -her head barely fit into the crook of my arm- but Taryn handed her gently into my arms and from that moment on Annie was no longer a tiny, sick baby --she was my little girl.

News Flash

Ladies and gentleman, evidence that the hat is back! Turns out Merta is the 'Flapper Elf' who works nights and puts them together. How cool is that? Anyway, here is a picture of a feasting Annie with her adorable hat. We added the other photo to just show how wonderful the NICU staff is. Annie is not doing as well as usual today. She had two epsiodes where her respiration and heart rate dropped and scared us all for a moment. She's come out of it but she hasn't been eating quite as well as usual either. As a result, we are tabling talks on Annie coming home and not bothering with the breathing test tomorrow. Lori (who I know you know well from our previous posts) was keeping an eye on Annie throughout the day but really sat down with Elly this evening to spend some time with Annie to see what's going on. This photo says so much about the level of care and concern that we experience every day. It means everything to us and meant all the more today when things weren't quite right. Hopefully, this is nothing more than a sign that Annie still isn't ready to come home. Annie could also be getting sick. We'll see. We're worried but ever thankful for all of our wonderful extended family at the NICU.

The hat is back!

Elly came in today and the flapper hat is back! Turns out there is a nurse who makes them for the babies and, much like a "Flapper Elf" if you will, creeps in during the night and puts them on all the cutie girl babies (sorry, guys). Elly met the nurse today and will have to track her down with her camera to get some photographic evidence.

Annie passed her eye exam yesterday (because she was so early we will need to routinely check her eyes) and will be scheduled for take 2 of her pneumogram on Sunday. Her weight gain is slowing down a bit so she is having more calories and fat added to her milk. That being said, she is just shy of 5 lbs! Tune in tomorrow for more photos of the staff!

The long goodbye

One of these days, they will discharge Annie. So we are taking advantage of these remaining days to thank all the fabulous people who have taken care of our Annie.

Immediately below is Big Annie and Little Annie. They go way back. Big Annie introduced Little Annie to Luke ages ago by picking her up out of her isolette and 'waving' at Luke. I will never forget seeing Annie as I was getting out of the elevator after learning Annie was on CPAP and facing another infection. She dropped everything and gave me a hug that gave me all the strength I needed to be there for Annie. Thank you, Annie.

Eileen (on the right) has been taking care of Annie recently and even took care of Luke when he was brand new! Next to Eileen is Melissa one of the NPs who always took us seriously and took the time to explain everything to us. Melissa has also been coaching Annie on life as a red head. Thank you Eileen and Melissa.

Below on the right is our buddy Deborah who is goes on crazy excursions with fellow nurse buddy Joan. We love them both and particularly love hearing about their adventures! Not really sure who that is with Deborah but he's around alot..

Below to the left is our buddy Ellen (looking particularly fabulous after a few days off from the craziness). Ellen is another one who has been with us since day 1. Ellen had the honor of giving Annie her head iv and offically welcoming her into her punk phase. Thanks, Ellen!




























On the left is Kyung, Suzanne and our favorite student. Kyung watched over Annie as we were getting her off of CPAP. Kyung is a tough one and I am convinced she willed Annie to breathe on her own. Weeks later, Annie is still afraid she might get in trouble and has been dutifully breathing on her own (with some small exceptions). I need to add that we will never forget Suzanne's many fabulous accents (i think it's Scotish/Irish) that she greeted Annie with. She's got talent and her warmth is calming to us all. Thank you, guys!

Finally, my friends, on the right it's.. THE MAN. Dr. Ellington came on deck after Dr. Navez went on vacation. We were skeptical given our love for Dr. Naves but, fortunately, Ellington has been educated at both of Elly's mother's alma maters so he passed the test. Sadly, he did not go to Chicago or Columbia but, well, we will forgive him. Regardless, Ellington has such a gift at translating medical doublespeak to English. He always makes extra effort to make sure we understand -in our language- whatever Annie is facing and whatever he is ordering for her. So many times we heard, "don't worry, this is normal". Ellington always went to the effort to help us understand preemie 'normal' and educate us on everything Annie was going through. That meant more than anyone will ever know -it empowered us as parents and, most importantly, took away so much of our fear by replacing it with knowledge. Lori, to the left of Dr. E, met Elly when she was in the hospital trying NOT to have a baby. She came as a humanizing face to a prospect (having a baby so early) that was so frightening to us. At the time, Elly had talked to so many people, cried, read and watched far too many Law and Order episodes that all I could think to ask was, "Do you like your job??". Fortunately, she does and so do countless others who you will meet in the coming days. Bless you all!

Making our point

Sure enough, Annie decided to have some breathing episodes last night and today. These are no stranger to us but it would be scary to deal with them at home without the NICU superstars. She continues to come out of these episodes on her own but it is a huge relief to know she is at Lenox Hill when they hit. Yes, it's true, despite the last minute disappointments we do still love our NICU family! Elly decided to call yesterday her 'to hell with it' day and went off and dyed her hair red. Don't worry, professionals were involved. Good thing she didn't pass a tatoo parlor...

@!%#$#&

So Annie is not going home for another week. They looked over her breathing test and there were too many pauses and breathing irregularities for them to feel entirely comfortable sending her home (even with a monitor).

As you can imagine, this is just so disappointing. We were thrilled that we might be picking her up this morning. However, we are so glad that they saw this now rather then having her home and running across a problem. There's not much more to say except...

WE ARE ONTO YOU, JAEDEN AND KINGSTON! These kids were obviously plotting something over the weekend. Jaeden has had a sly smile on his face for some time now..

Ready, Set, Blast Off!

The countdown begins! Luke has completed his test drive of Annie's car seat, crib is ready, meds picked up.. Sure we forgot to get diapers but we're practically ready! We learned today that Annie's breathing test hasn't yet been read by Dr. G. Early indications are that Annie's breathing is not quite perfect and she may need to go home with a monitor. If so, it may take another day before Annie can come home while we arrange for a monitor. We won't know until tomorrow so stay tuned.

I write this while looking over at the empty crib and realize that I can now accept that Annie is really, truly coming home. For so long, I wouldn't allow myself to think of such a thing and stuck to facing whatever the issue of the day was. Now I can imagine her coming home, taking her outside, watching Luke get to know her.. the list goes on. I now see that we are past this and little Annie will be home soon. Waiting a day is really no big deal at all.

The Craziness Ensues

The day has been spent running around doing loads of laundry and getting ready for Annie. Annie is doing great and eager to get situated. She started getting her vaccines today and, while her temp is a bit low, continue to do well. If only the rest of us could say the same!

WHAT?!?!

Yes, it's true. Elly found out today that Annie is defying all expectations and will be ready to go home on Tuesday! She still has to pass her breathing test but, given her performance these past few days, we see no reason why she won't pass with flying colors.

While it is just terrific to be in this position, we will miss the NICU staff and the amazing famlies we have come to know. We are all one family now and we look foward to continuing those friendships after we break out!

Annie = Fab

Annie is gobbling down more and more of her feeds via bottle. Once we get all feeds by bottle and she passes this test that assesses her breathing over time we are OUTTA THERE. Meanwhile, at home, mild pandemonium is beginning as we realize we need to get to our stuff together and do some serious shopping at Buy Buy Baby. Please notify all credit cards companies to start their engines.

Special note from Annie:
ATTENTION JAEDEN! Kingston and I are onto you. We see you creeping over towards the entrance of our room! We will speak with Kingston's bunkmate to move on out so we can make space for you. Come join the party!

Annie of the North

We have proof. Annie is out of her incubator and living life in wide open spaces. Then again, she is wrapped up tight with 3 blankets and 2 hats. She was so covered up, I thought she was off to scale Mt. McKinley or explore the Northwest Passage. Could be her Uncle Nate's influence there...

Thankfully, Annie is staying warm and that's all that matters now. She's increased her milk consumption, up to 40cc every 3 hours.

Steve

Moving out!

Annie's weight last night was officially 2 kilos. She is also heading into the 'step down' room later today. This room, my friends, is the last stop on the NICU express. After that we go HOME! Annie still needs to figure out how to maintain her own temperature (we are making our 4th try right now) and eat regularly from a bottle. By best, unoffical, estimates we are looking at no more than 2 weeks! This is crazy talk. Do folks think we can actually take care of her without a staff??? I mean, we might need to wake up in the middle of the night.. change diapers...crazy.

A replacement hat

A 2nd hat has been found and drafted into service, keeping little Annie's noggin warm. While it is a very cute hat, you can see that its hard to find hats that fit. Annie says this is a great hat for napping in as it covers her eyes so readily, but she is still actively searching for her flapper hat.

Steve

The investigation continues..

Annie's tummy still bugs her but getting off of one of her drugs really seems to have made quite a difference. Today she was pretty miserable and it was hard to see her so obviously uncomfortable. That COULD be the reason or it COULD be..

..the flapper hat..

It is still missing. I think Annie's patience is running out. We do have an eyewitness (please refer to Kingston's earlier post). However, Kingston is leaving the hospital soon (woo-hoo!). Without his testimony, we may be sunk. Either that or Jaeden and Annie will have to do a bed by bed diaper check. You just can't trust these little ones... They weigh less than a bag of sugar, fight infections, learn to breathe, steal cute hats... this is going to be a tough case to crack.

gobbling, burping and no meds!

Well, we are one day in on no meds for her theofoloyn (or however it's spelled!) and Annie is doing just terrific. This is the first time in her whole 6+ week existence that she has breathed all by herself with no help! It will still take another day or two for the meds to entirely get out of her system but we hope she continues to do so well. We tried last night getting her out of the isolette but she's still not quite ready yet. No prob. I'll take breathing on her own any day!

Elly gave her her 4pm bottle and she gobbled it down, burped and didn't appear to have any reflux. This is huge for Annie. We're starting to reach those milestones! Go, Annie!

Everybody cross your fingers!

Annie's reflux is really the primary challenge we are dealing with now. It causes her alot of pain and a reflux episode can even impact her breathing. Yesterday, we tried taking it easy with bottle feeds and gavaging any time she was sleeping (i.e. through her feeding tube). She is still having some vomiting so today we are trying taking her off of the (say it with me now) Thee-of-o-lyn. This is the drug that has been helping her with her breathing since she was born so I'm a little nervous! However, it's incredible that she is strong enough to experiment with taking her off the drug. So... fingers crossed. This could be a huge step for Annie and, hopefully, assist with her reflux.

In other news, ANNIE'S FLAPPER HAT (see photo below) HAS GONE MISSING. Annie is quite upset. If anyone sees her flapper hat making a run for it.. stop that hat!

Annie Picture...

Elly snapped another camera phone picture of Annie today. This time sporting a cute hat, Grandma's blanket and eyes wide open :) Unfortunately she spit up on said blanket a few minutes later and we'll have to wash it at home this weekend.

Steve

Late night party in the NICU

So last night we received a call from one of the neonatologists (who incidentially was there when Annie was born!) that Annie was showing possible signs of infection. We allowed some time to pass, took another xray and decided against a sepsis work-up (yeah! no spinal tap!). Unfortunately, Annie was off foods until early this afternoon -part of the signs of infection lock-down protocal that we have become so familiar with- so she was not to happy when Elly saw her this morning. We think the culprit was a feeding that was a little too much for her and caused some vomiting -not any nasty infection bugs! Thanks to the night crew who was so attentive to these changes in Annie while not rushing any unnecessary tests we are looking good today and back on food.

Meeting 'the Man'

Elly had a chance to get an update on Annie today from the attending neonatologist (they switch every 2-4 weeks). From the sound of it, her doctor seems to be the Founding Father of Neonatology and actually started up the NICU at Lenox Hill. If anyone wants his autograph, let us know. Dr. G's (i.e. His Holiness') knowledge of the field and concern for Annie's care is very impressive and, most of all, comforting. Basically, Annie is doing well but is still a preemie so we are looking foward to her body maturing more so she can perfect the art of being a 'grown-up' baby.

The puff returns..

We learned today that Annie's fluid retention returned a few days ago and was impacting her breathing and blood pressure. While this is not uncommon among preemies, this took us a bit by surprise. Annie was given a diaretic on the 3rd and 4th and has been busy shedding the excess fluids. This is her second round with these diaretics so Annie is now down to 3 lb 12 ounces from her all time high of 4lbs 4 ounces. It's hard to accept that this much weight loss is good for Annie but we remind ourselves (as some of us know all too well!) that there is a real difference between 'real' weight and 'water' weight. Come to think of it, I believe there are a number of spas that offer a similar type of 'cleanse'!

Stylin Annie

Elly got to give Annie a bottle today -all by herself! Looks like we needs a little more practice. Annie's reflux can be pretty bad so we need to take some time burping her and giving her breaks. Annie has also become quite the stylin' girl lately. Gran brought a number of onesies for her and Annie's new outfits have been a hit around the NICU!

Luke and Annie - together again!

We took Luke to Lenox Hill today to see Annie. As you can see, he was a bit cautious initially but ended up all smiles in the end (note Annie waving to the camera -she is a miracle baby). He was very concerned that Annie was happy and very curious about the 'straw' up her nose. While we've explained to him that the 'straw' is for medical use only, I'm going to have to keep an eye on the straws around the house.

Annie keeps plowing ahead. Now our visits are spent changing diapers, feeding her (either gavage or cheering her on as the nurse gives her a bottle), and telling her how proud we are of her. This is a big step away from willing her monitors to stop going off. They still do, occasionally, but we are no longer willing her to breathe. Thank you, God.

In other news, when we went back to visit Annie we were greeted by a biohazard bag with her onesie covered in 'explosive' poo. That will so be saved for posterity. And big bro Luke peed in the potty. So, life is good among the Daugherty wee ones -at least from a GI perspective :).

A baby, a real baby!

We tried again to take Annie out of the isolette and it (again) didn't fly. I'm hoping we can take a break for a while since she seems to really not be ready to hold her own temperature. Aside from this, I am so moved by how she is starting to transition into a healthy little baby. We brought her a new wardrobe today (including a 'Grandma loves me' onesie) and Elly was able to spend several hours with her during her day off. Unfortunately, her nurse shared with us that an "explosive" poo later in the day killed one of the onesies. Not to worry, she's got more!

Aunt Kit gave blood (for the first time) to have on reserve if Annie needs any more blood down the road. Gran came along to hold Kit's hand and the Burke gals all went out for a nice glass of wine and lunch afterwards. We looking foward to continuing the 'ladies who lunch' tradition (bottle of wine required) with our Annie!

Elly

Promoted!

Well, Annie has been moved out of the ICU area of the NICU to the, um, well, not-so-ICU part of the NICU. She's in another room now but is able to look through the doorway at all of her friends in her old room and cheer them on. She is being looked after by the same nurses and it is THRILLING to see her take this huge step. We experimented with a few things yesterday. She is off her nasal canula and breathing room air. So far, so good. We're proud of you, Annie! We did try to get her out of the isolette but Annie didn't fair so well on maintaining a warm emough body temperature so she's back in (frankly, I would opt for that as well -it's warm and comfy!). Annie's message to us seems to be one of patience: one day at a time, one challenge at a time...we always get there. Annie is working on 4 bottle feeds a day (2 per shift). It's challenging to remember to breathe and suck but she is working at it!

As wonderful as it is to be moved to the new room, I have to say from the bottom of my heart that our thoughts are with all the other babies and families still requiring the intensive care that Annie's received for the past 5 weeks. Our prayers are with you. We look forward to being roomies again soon and I've spoken with Annie about aggressively recruiting the other babies!

Elly

Gran Report II

OK, hold your applause. The next installment of the long awaited Gran Report is here. Actually, I have been stalling on this posting because I wanted to have a good story about giving blood for Annie. Well, trust me, you do not want to hear the details on that adventure. And, worst of all, when everything was over, they couldn't use my blood donation for Annie. Seems there is some viral thing that sneaks into one's blood if you've had time to be exposed to it and preemies can't handle that. As Snoopy would say. AAArrrggghhh!!! Oh well, someone somewhere will be getting an infusion of Top Lady blood cells and I wish them luck. (Do you think this a subtle way of letting me know I'm getting old? No way --- right?)

In lieu of that adventure, however, Gran would like to take advantage of her Senior Advisor status (see, I told you I was getting old) and comment on something Elly mentioned in an earlier post. She talked abut being scared. Well, I have something to say -- It's alright to be scared! Like it or not, that seems to be a part of the human condition. My advice is to think of it as a challenge to God. There are a whole bunch of things we can't handle by ourselves, so it's time to lean on Him and let Him do His stuff. That's perfectly all right. I'm prepared to sit here and applaud my head off.

Annie gets a bottle

Annie got her first bottle last night! She drank 11 cc's before conking out on us (its quite a workout you know). You can see her getting burped afterwards by Taryn. Annie is doing well, she's finished her antibiotics and IV's. The feeding tube was moved from her mouth to her nose, so Elly is a little concerned that we'll have to pay for a nose job later in life. Personally, I think if we allow her to get a nose ring we'll be covered...

And no, Taryn is not 10 feet tall, Annie is still really really small.

Steve

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!).