Share. Connect. Love.

Posted 2019-01-24T22:19:48Z

1/24/19

It's crazy and sad to think that Cameron would have been 4 months old today. There's not an hour that goes by that Melissa and I don't think about her. I thought after a couple of months things might start getting easier, but time doesn't change the fact that we aren't taking a 4-month picture with Cami tonight, posting it on social media, and sharing our love for her with the world; enjoying all of our sleepless nights cuddling her, kissing her, and watching her grow. The fact that Melissa and I are still a family of 2 is so extremely heartbreaking. Both of us are back at work trying to resume that daily routine and sense of normalcy, but it's not as easy as we were hoping. Sure there are things like work, TV, friends, exercise, and other things that can help take our minds off of her. But you know those moments every night before bed, when you shut your eyes right before you fall asleep, your mind wanders until it finally settles down and you fall asleep? Every night, those moments are filled with memories (good and bad) of Cami for both of us. It's the only time during the day when it is impossible to be distracted by something else. Maybe it's good that we think of her during those moments, to make up for the time during the day that we "forgot" about her. Maybe that's how we'll fall asleep every night until we have another child. Maybe that's my main connection to Cami now that I can't have a physical one with her. I don't like going to bed sad and teary-eyed, but I also don't want to lose those memories and connection with my daughter. [...]

Posted 2019-01-01T20:37:00Z

Happy New Year!

Hey everyone! It’s been a while since I last posted, but I wanted to take this opportunity to wish everyone a happy new year! 2018 was definitely the toughest and most painful year of my life, but the love and support from you all has really helped make it a little easier. We remain so thankful for all of your contributions, donations, gift cards, Cami memorabilia, and kind words. Please continue thinking of Cami and her impact on all of our lives. Melissa and I miss her dearly.[...]

Posted 2018-12-03T01:23:49Z

Missing Cami

It's been over a week and we miss Cami terribly. Melissa and I have our ups and downs, but we're hanging in there. I'll be returning to work this week and Melissa in January. We spent a couple nights last week at Gervasi Vineyard in Canton. I'd highly recommend that place if you like wine, good food, and rustic getaways. [...]

Posted 2018-11-26T00:03:56Z

Angel

Today, we laid our precious Cameron to rest. We had a short but sweet (just like her life) memorial service at the cemetery with our immediate family. Not only should a parent NEVER have to bury their child, but no one should ever have to witness an infant casket. Picking one out yesterday morning and then watching it lowered into the earth this morning was the most heart-wrenching thing I’ve ever seen. [...]

Posted 2018-11-23T20:39:51Z

Thanksgiving

Mel and I are so thankful for being blessed with a beautiful baby girl, being in the hands of the best medical care in the country, being close to so many family and friends during this difficult time, and receiving such amazing support from all our virtual friends. [...]

Posted 2018-11-22T05:59:28Z

How Firm Thy Friendship

Overall, Cameron had a pretty stable day today. There was one tiny scare where her heart rate was high and wouldn’t come down, but we flipped her on her belly again and that helped. We both enjoyed some cuddle time in the bed with Cami filled with Eskimo kisses, stories and songs. While we were still sleeping this morning but Cami was wide awake, our nurse Jen told her a story about Princess Cameron of House Steinberg, Buckeyes living in the kingdom of wolverines. The King and Queen were sleeping and Princess Cameron was taking on the world. I don’t recall the rest of the story, but I think she went out and destroyed all the wolverines and ended back in Buckeyeland, right Jen?? 😜[...]

Posted 2018-11-21T04:25:41Z

Exhaustion

As Melissa mentioned last night, the physical and mental exhaustion is starting to kick in. We both tried sleeping in Cami’s room last night but didn’t sleep well at all, nervous about what would happen today. However, I think Cami had a much better day today than yesterday. We are still seeing signs of deterioration, but she didn’t turn as dusky and fragile as yesterday. Melissa was able to hold her for a tiny bit today, but Cami needed to be back in bed. Due to this, we asked for an adult hospital bed so we could lay with her. If these are truly our last days with her and we can’t hold her, we want to at least lay next to her. At one point, Melissa was lying down with Cami on top of her which made Mel feel a lot better. So we’ll soak in some more snuggles tonight and hopefully the rest of the week. We have no clue what’s going to happen. [...]

Posted 2018-11-20T17:33:44Z

Sorry for the late entry

Hi everyone! Sam and I didn’t get much rest and Cameron had an on and off night. Cameron seems to be tuckering out and is becoming more exhausted. Her poor little body is working harder everyday to breathe, and that in turn is making her burn more calories and increasing her respirations (making her breathe faster than she should be). I tried to hold her yesterday and she lasted 15 mins before turning dusky and dropping her oxygen saturation. So we put her back in bed on her belly to help get her oxygen back up.[...]

Posted 2018-11-19T04:58:00Z

*ichigan Week!

Cameron had another stable day. Her chest X-ray this morning was still hazy, so they made a few changes to her CPAP settings and changes to the respiratory treatments, hoping to pop open more air sacs in her lungs. Her heart rate still dips when she poops or coughs, but quickly comes back up. Chest tube output looks like it will end below 100 ml again, even though we upped her feeds to 11 ml. Just about an hour ago they upped her to full feeds, 14 ml.[...]

Posted 2018-11-18T03:30:00Z

With A Little Help From My Friends

From last night going into today, there has been very little drainage from the chest tubes. She still has some haziness in her x-rays and they will continue the Mapleson treatment, but otherwise she seems to be doing pretty well. Occasionally she'll drop her heart rate near 100 which scares us a little bit, but it bounces back up pretty quickly. They upped her feeds from 5 ml to 8 ml around 6 tonight and might continue increasing tomorrow. It will be really interesting to see if the chest tube output increases with the increased feeds, or if she can actually absorb that nutrition and start gaining some weight (she's at her birthweight currently). [...]