Life With Brinley

This picture is our girls with their cousin Hudson, we had a stand-in for 

Brinley who was still in the NICU. It is so nice to have her home now!

I apologize for our prolonged absence. Life with Brinley is all-consuming. I honestly don't quite know how to put the past two and a half weeks into words. First, we are very grateful to have our whole family at home. Brin seems to be thriving. We have already taken her to seemingly countless doctor appointments and I honestly could not tell how many people have been in our home. One day we had nine people come through. They can include anyone of the following: Medicaid people, supply company people, Brin's case worker, Early Intervention, visiting nurse, some of our NICU friends (we have had two here so far!), friends and family bringing meals or helping with cleaning or kids, or cleaning the kids ;) and her therapies haven't even started yet!

For the most part the Dr appointments have been planned and things are going as we expected. The one exception was addressed by my mom in the last post. We were very discouraged by the thought of another surgery (on her skull nonetheless!). This Wednesday is her skull x-ray which will determine if surgery is needed and how extensive it would be. We arrive at 8:30am and have four different appointments. I'm thinking Peter may not make it in to work that day.

This past week Brinley started getting her immunizations. Our pediatrician decided to cut one of them out and only give her the ones that pertain to respiratory sicknesses. We agreed that she would need as much help staying healthy and breathing as she can get come fall, and it's not exactly easy to load Brinley and all her gear into the car just for a shot, so that was what we did. That day she just slept a lot but the next day she ended up with a crazy high heart rate and thick secretions. Thankfully, a new nurse friend was with me that day and helped me keep her as comfortable and safe as we could. She was unable to come off the respirator at all that day and spent a few hours on oxygen as well. Suffice to say, I think we will have to go even slower with immunizations in the future.

Our Medicaid process seems to be coming along fairly well now. We may end up getting Brinley's therapies and Medicaid number around the same time late July. So, at this point it is mostly exhaustion and sheer exhaustion with a whole lot of love, cuddles and maybe a side of tears. We love our girls so very much and it is hard for me not to be able to give each of them the attention that I normally would be able to. Even Peter does't have as much energy for nightly wrestling as usual. This weekend my cousin and his wife visited and he did a rock-star job of wrestling/playing/fighting with them. Thank you #thor!

We have been trying to continue some of our normal weekly activities. Brinley's first outing was to my brother-in-law's soccer game on father's day. She did awesome! We have since been to my brother-in-law's engagement party, which was a blast. Brinley got to meet her aunt, uncle and cousins from VA, both of Peter's grandmothers and one of mine. Our oldest was baptized at church last Sunday and it was such an amazing experience having our whole family there to see it. Brin cheered daddy on at our church softball game as well. Last night we got chinese and ate at the local park. It is a process but we are making it with a lot of prayers and hands-on help. I want to thank all of you that were here this week playing with the kids, cleaning the house, holding Brin and chatting. You guys are enabling Peter to go to work and helping me not lose my mind.

Here is what you really read this post to see ;)

Brinley's NICU primary nurses J & M- we love you two!

Brinley meets GG

And Sittou (fun fact, Brinley is great grand baby #31 for Sittou)

At daddy's softball game

Snuggles at the park

Brinley's first ride down a slide! She kept her sats at 100

Naptime with Daddy 

Storytime with Raina is the best

What we are really like

Putting on our "normal people" faces

Please keep the prayers coming! We will let you all know how Wednesday's tests pan out. Thank you for still standing with our family two months later...it means so much to us.