day 165. The past week or so has been a roller coaster. Jackson was moved back to the PCU about two and a half weeks ago, and has been doing great. His medication wean had been steady, his feeds weren’t increasing but were manageable, and we were on our course toward home. Or so we … More On our terms.
We always knew Jackson would be one in a million. I mean, doesn’t every parent think their child is one of a kind? What we didn’t expect was that Jackson would actually be one in a million – one of very few people ever diagnosed with a genetic syndrome that helps to explain a lot … More rarest of the rare.
One of our heart buddies had an ostomy placed today. It isn’t an easy decision for any parent – bowel surgery isn’t on the list of ‘firsts’ we expect for our little ones – but when the choice is literally life or death it becomes an easier one to make. Naturally, I reached out to … More remembering the details
Valentine’s day takes on a whole new meaning when your child is diagnosed with a heart condition. Suddenly, you start picturing the heart not as the round, welcoming shape you find on cards and in stores. Instead, you see the heart for what it is or what it can be, a mix of vessels and … More heart day.
It’s often hard to put into words what our week looks like. The ups and downs and in-betweens seem to happen very quickly, and I’m guilty of sometimes forgetting about one before moving on to the other. I decided that the best way to show this is through photos – nothing special or professional or … More a week in pictures.
Hey new mom friend, Ashley here. Jackson’s mom – yes, that Jackson. The one with the trach, the one with the CHD, and the one your little one just invited over to play. Or maybe we set up the time to meet. Either way, I’m super excited to be getting together. Play dates are the … More why i have to ask if your child has been vaccinated.
I used to hate making my bed. It seemed like such a waste of time. Why would I make something look nice that I wasn’t even going to see all day, only to come home that night and mess it up again? It wasn’t like someone else was going to be standing in my room at two … More why i’ve decided to always make my bed.
day 133. Zach and I have a running joke. The minute you say ‘we’re almost done’, you’ve officially jinxed yourself. It doesn’t matter what you’re doing – ‘we’re almost done’ is a nice way of buying yourself more time, more stress, more work. Last week, Jackson was moved from the CVICU to the Progressive Care … More super week.
day 125. Today is a big day. After almost 18 weeks in the CVICU, Jackson has been officially cleared to move to the progressive care unit, or the PCU. Orders have been put in, teams have been notified; now all we have to do is wait. The progressive care unit is definitely a step in … More making moves.
There is apparently a world in NICU they call ‘feeders and growers’. A place where they send babies who were born a bit too small or need a little extra help getting home. We didn’t go to that world. We went to a world of beeping alarms and red carts. Of vent tubes and intubation … More celebrate the good.