We have spent a lot of time in the hospital, like a lot of time. Needless to say, I find myself comfortable here somehow and often times I wonder why.
It’s not often that I like to remember the time we have spent in the hospital with Brooklyn and after the time off we have had, coming back for her MRI was difficult for both of us. In my heart, I know she knows what happens here, she is aware of what goes on and that this is where shes been poked for the last year. However, despite all of the pokes, surgeries and treatments, we have surely met some of the sweetest people that have made all the difference in our journey.
When we first stayed in the PICU, we were greeted by a plethora of physicians, oncologists, surgeons, and nurses. Many providers came in and out to check on Brooklyn but the ones that stick with me the most are the women who hugged me while I felt hopeless, while I mourned the journey that our daughter was about to embark on. She was 9 weeks old! She shouldn’t have had to do any of this! Many people said all of the wrong things, or didn’t know what to say, or sat and just stared as I listened to my daughter cry as another IV was being placed hoping that they would get the hint that my face said “go away”. Those who got it, got it. Bless this woman for putting a sign on the door that said “see nurse before entering” because when I couldn’t shoulder the overwhelming questions, she took that off my plate and let me feel all of the things.
During our time in the PICU, we had the very best day nurse who took Brooklyn from the day she was admitted on August 27th and was with us during her surgery on September 7th. This sweet woman- not knowing us from Adam- hugged me and assured me that the neurosurgery staff was really the dream team. Brooklyn was getting the best. If adults are saying that they would let the pediatric neurosurgeon operate on them, it was good enough for me.
I had taken the milestone pictures on the floor like any new mom would when their baby turns 1 month old. When Brooklyn turned 2 months old, we didn’t have a chance to take her 2 month pictures at home because of appointments and then we got admitted. It was hard for us to feel like taking pictures was appropriate because of the severity of the situation. Brooklyn had an EEG to measure her brain waves, she had IV lines, she had a catheter and I was just so sad looking at her! When we had another nurse during the day who told us firmly “ Take the pictures” and we did. We brought her milestone blanket and got on the floor with Brooklyn while our nurse took the pictures. She helped us change Brooklyn’s outfits, avoiding the monitors and wires and we did the damn thing. We took family pictures on the floor of the PICU and shared them with our world.
When you talk about “family centered care” we truly experienced that during our time in the PICU. We had providers checking on us, asking us how we were doing. We had night nurses who would continue to come back to Brooklyn’s room even if they didn’t have her as a patient because they wanted to know how all of us were doing. They colored pictures, made signs and softened a hard stay. The one night after Brooklyn’s surgery when she was intubated, she held her breath over the ventilator and our room was filled with all of these people concerned about what our feisty miss was doing. No worries, when you pull the cord out of the wall, it calls a code – after all was said and done, providers explained what happened, why the large rush of people and finally asked if Ben and I were okay after Brooklyn was settled. Finding providers who listened to our concerns about Brooklyn’s irritabity and sleeplessness and aiding her to get the rest she deserved was such a blessing!
So as I sit here typing this entry, I think about the kindness from the neurosurgery staff, the PICU staff and the support staff that we have had through this journey. I talk a lot about our oncology experience and the outpatient clinic because that has been the majority of our journey but I cant forget about where we started and the incredible support we leaned in to when all of this began. Whether they were just with us at the beginning or are still with us as we are starting our LAST ROUND OF CHEMO in a little over a week, I remember. I remember voices, faces and warmth of hugs from that stay and remember why I feel some bit of comfort at this hospital. Occasionally I will bump in to someone from that initial stay and while the tears of gratitude sting in my eyes, I fight them back only to share the joys with Brooklyn’s successes since they met her at 9 weeks old. When it’s all said and done, when counts recover, I can not wait to take her back to see the people that started this journey with us.
Brooklyn is fearfully, and wonderfully brave.
Fearfully and Wonderfully Brave 