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