Fever saves the day

So, Annie spiked a fever. This ended up being a blessing in disguise. The antibiotics have finally broken through and her breathing has made dramatic improvements. This is a real relief since the heavy meds didn't really seem to be having a large impact. Whew.

Let go, let God.

It's been a tough week. Annie's breathing continues to be strained and the meds we were giving her just weren't kicking it. She is now on her third day of the tougher steroids and, when you are in it this deep, it's just hard to tell how much she is improving. I just can't believe this is happening in August. It's going to be a long winter.

Last week, I came home after a tough doc's appointment with Annie. The toughest part being the option I want, to find the miracle cure that will just make this all go away, doesn't exist. There isn't a miracle drug and we are resorting to doing our best. So, on the heels on this disappointing dose of reality, I run into our broker (oh yes, we're selling out apt) and strike up a conversation. She has been through some challenges of her own with their (not so little) guy and she is as equally Type A as I am. She shared that when things are tough, she resorts to this prayer/mantra/release: "Let go, let God". It has become something I have held on to tightly these past few days. I share it with all of in love and hope that perhaps we can all, event the Type As among us, release a bit of that fear to someone/thing greater and get on with the stuff that we can fix.

Honeymoon over?

Poor Annie developed a cough two weeks ago and it's getting increasingly worse. I think her (incredibly awesome) pediatrician nailed it today when she replied "crap" after I updated her on how Annie was doing. We are back on all of our meds and debating putting her on more. Since nothing really seems to be the slam dunk when she is having a tough time, I struggle with giving this little thing so much medication. It's a challenge but we continue to be so thankful for our ever-expanding team of docs and therapists who join us in routing Annie on to better health.

Despite this, Annie is her usual crazy self. She spent the day out in the sunshine at the summer house and is now cuddled with me on the couch trying to get some rest. It's been hard for her to lay down and sleep so I suppose I will accept the burdensome task of holding this sweet little girl and watching her sleep. Bummer.

Annie hits the Today show!!

Today is Be A Hero for Babies Day and Annie woke up bright and early to help March of Dimes and Farmers Insurance raise $2M in one day. You can help too! Farmer's will match your donation so you know what to do....

https://www.marchofdimes.com/howtohelp/farmers.asp

Da-Da

It's official. Annie has said her first word. Today, at a small diner in Yonkers. Annie looked at Steve lovingly and said, "Da-da". It was deeply moving. I teared up, Steve was moved, and Luke looked proudly on at his little sister.

Then she looked at the lady in the booth next to us and said, "Da-Da".

Then the waitress, the guy walking by, the salt shaker...

Allergist

Now that Annie is 1, we were hoping to be able to run more tests to get a better sense of what has been leading to all the respiratory issues. We took Annie in to be allergy tested and it turns out that is not the case. It was actually a little disappointing bc that would have given us a bit more of a definition and an action plan. We are now left to thinking she is still working through having under-developed lungs. The nagging questions are when this will resolve itself and if there are alternative ways that can help her until her lungs get stronger. So, we will hang tough and keep at it. The wonderful news is that she is just doing wonderfully now and we have been able to remove some of the drugs she is on. Our greatest hope is that she can enjoy the summer without daily meds for breathing. We'll bulk back up again when fall hits but, for now, we are enjoying this honeymoon period!

Annie's birthday week: She's 1!

What a year this has been. We have only recently returned from a wonderful vacation celebrating Annie's birthday and the conclusion of a very tough year. Luke threw a birthday party for Annie, we visited the ocean, mini golfed for the first time and enjoyed the blessing of our friends and family. We are so grateful to everyone who has helped us through what is easily the most demanding year we have ever faced. We learned so much about the strength of family, our ability to cope and learn when the preemie roller coaster offered us countless highs and lows, our need to support other families so they never feel isolated when dealing with prematurity..the list goes on. We are so thankful that we walked hand in hand this past year with so many wonderful friends, families and a medical team that has given us the tools to get Annie through this first year.

Looking back is hard. I have to say that when May 27 hit it was hard to think back to where we were that time last year. I was so frightened and unsure of what Annie's future would be. I felt I had failed her and prayed that, despite my failure, she had the strength to get through. A year of countless challenges has followed. During that year, Annie has taught us that her medical challenges are mere technicalities. It is her spirit that warms my heart and pushes away those moments of guilt. She has faced every challenge with a smile and always that feisty spunk that was so apparent the moment she arrived in this world. We have persevered because of the joy that radiates from her. With that spirit fueling our way, we look to the future with strength and optimism and don't waste too much time looking back at those times of fear and uncertainty. Annie still has a long road: speech therapy, physical therapy, feeding therapy, allergists... obstacles that we will overcome with the strength and love that is freely given by Annie, Luke (who has done nothing but adore his little sister), his family, and all of you, our dear friends. Our love goes out to all of you. Enjoy these photos. The journey continues...