Day 365

Day Of Life: 365

Weight: 19.3 lb

Height: 27 in

Corrected Age: 8 months 10 days

Happy Birthday Natalie Rose!

I cannot believe it has been one whole year since Natalie came bursting into our life. 12 months later and 8 months out of the NICU and she is doing fantastic. She goes to physical therapy once a week and we love her therapist, Elsa. She is rolling really well and she is starting to test out the crawl position so she will be on the move in no time! She has had some trouble doing exercises on the side of her body where her scar is, but recently they tested out using kinesio tape on her and it has made a great difference. Her doctors have been very happy with her and the only specialist we still see is her pulmonologist (which we now only have to go every 6 months!) and, of course, the NICU Follow-up Program which we will be doing for the next few years. The only real problem we have encountered was she is having problems eating. We put the food in her mouth and she just stares at us like she does not know what to do with it. This is not surprising considering how hard it was to drink out of a bottle for so long – so back to the feeding specialist we go. However, if this is our only complaint, we are doing pretty well. Thankfully she loves her bottle and is even able to hold it herself now!

Natalie has recently learned how to clap her hands and shows this new trick off to anyone who looks at her for longer than 2 seconds. She has started waving recently and we cannot help but cheer for her every single time. She smiles constantly and loves to laugh her deep, throaty baby giggle. She loves her Mom and Dad, but, let’s be honest, her 60 lb dog (Willow), is what gets her most excited. She is always happier if there is music playing even if it is low in the background. She loves bath time with Daddy and dancing in the kitchen with Mommy (usually to the 90s pop station on Pandora). She just started daycare a few weeks ago and is enjoying every minute. When I walk her into her room in the mornings and she sees the lead teacher she starts beaming and tries to jump out of my arms.

As for us? We are doing good. We are adjusting to this new life of daycare that has not been too difficult just trying to figure out how to get everything done in 24 hours is challenging like for every other parent. I have found that as we have gained more distance from the NICU that I have a harder time dealing with certain memories. It is not the fact that she was born early or in the hospital for months because I am very grateful for how everything turned out and for the people I met along the way. I do not look back on what happened with anger or stress in general. However, I do find myself dwelling on the weekend she got sick and had her surgery at the most mundane times. I’ll be in the shower or driving home from work and it will hit me and I cannot help but think about it and (usually) end up crying. In its own way those memories haunt me a little. From getting the phone call to showing up to find her grey and motionless with a dozen of people working on her. The talk with the doctor about how she might not make it to the xrays every 4-6 hours to see if anything changed. I look at my healthy, happy, beautiful baby and it just bothers me so much. As we get closer to the year anniversary it has been bothering me more, but I know in time it will fade. I tell my friends that I am experiencing some weird sort of PTSD for NICU parents and laugh because I feel like I am being dramatic, but I do think there is some trauma to get over.

However, I am also very appreciative for the start of Natalie’s life. Not that I wish it on anyone, but I can take the good from it. I cannot imagine not knowing her for the 4 months before she had been born. She was so spunky and noisy and fought so hard. Around 40 weeks when we were going home she had mellowed out into her infant laziness of sleeping and eating all day, but in the past few months as her personality emerges more and more she is that same sassy little girl. It is amazing that at just 24 weeks these infants have personalities – that is not something I would ever expect. Those months in the NICU also introduced me to some of the most amazing people I have ever met. All the staff there have a very difficult job and most people probably think they spend their days playing with babies which is the furthest from the truth. They selflessly give their heart over to every baby knowing that there is always a chance that heart will get broken and I could never thank them enough for that kind of devotion. We made friends with fellow families that were there for months with us and that is a special bond that I treasure as well.

Today, the only thing I wanted to make sure I did was visit the NICU on her birthday. The visit went great and we got to see lots of familiar faces I have missed. They could not believe that it has already been a year and Natalie gave every single person a big, juicy grin. They kept thanking us for coming and I thought that was odd - where else would I go on this special day? It felt great to be back and I know we will continue to visit throughout the years.

Tonight, as my family sung "Happy Birthday" to Natalie, I had to find against major tears. I did not think I would get emotional, but it has been a crazy year and the enormity of it all hit me as I held her close and made sure she did not get too near the flame. So, on her 1^st birthday I would just like to say how proud we are of her. I am thankful for the doctors and nurses’ decision-making and care and the excellence of her surgeon, but it was Natalie who had to fight and not give up when she was only a few pounds and 28 weeks gestation. I am in awe of her. In her little life she has already influenced so many people: family, friends and strangers. She taught us all that miracles do exist and reminds us everyday when she shoots us one of her giant smiles.

Thank you to everyone that has followed her story from the beginning and prayed and rooted for her. I was thinking this would be the last blog entry, but who knows, maybe I will visit every January 20^th and update you on our special little girl.

And to anyone who might stumble upon this who is dealing with a similar situation – I hope this helps you cope and understand what is happening around you. We learn quickly that there is not always a happy ending to these stories and we were lucky enough to get one. I hope you do too.

A dose of Natalie Rose throughout the year: