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!