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.
The other night, I decided to make chocolate chip cookies. Nothing new, right? I love to bake and it was Sunday, also known as ‘cookie night’ in our home. This week was different, though. This week I decided to bake cookies…. from scratch… without a recipe. *insert gasp here* Most days, I simply pick up … More cassava flour cookies.
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.
I can normally make it about four hours. One hour home. One hour to exercise. One hour for dinner. One hour to relax. Then, I get nervous. Every night, it is basically the same. From the time I leave the hospital to the time I want to call to check on Jackson, it’s about four … More four hours.
I have a confession to make. A few weeks ago, I shared with you that Zach and I were starting a Whole30, even though our life was basically in shambles at this point. Great shambles; adorable, baby shambles. But, shambles none the less. It seemed like a good time to start, when life was at … More confessions.
day 116. This past week held a lot of big changes for Jackson. To say we were surprised by the outcome this week would be wrong – this is something we have toyed with since only minutes after he was born. But, I would be lying to say that we were hoping for a different … More trach time.
I get a lot of new moms who stare in awe when I tell them Jackson’s story, recounting every surgery, every procedure, and every unexpected twist the same way they talk about their little ones first smile or coo. There’s a lot of pride in being Jackson’s mom – he’s a strong little man and … More here’s to you, typical mom.
My husband and I just started a Whole30. Seems like a sound plan, right? I mean, it’s not like we have much else going on. Son’s in the ICU? Check. Potential tracheostomy and expected extubation? Check. Carefully balancing work and home life while simultaneously completing a masters in nutrition? Check, check and check. Zach and … More why i’m doing a whole30 while my life is in shambles.
Any parent of a medically-complicated child will tell you that ‘surgery day’ is always terrible day. It’s the day where you hand over your little one to the team that will love them and care for them for the next few hours; that will literally cut them open and repair their problem and put them back together … More the day before.
day 106. It feels like time has sped up since Jackson’s surgery. We spent a long time in limbo, in this weird waiting time between needing surgery but not needing surgery, being ready but not being ready, needing a surgery slot but not having space. Every time we started moving forward we would end up … More rephrase.
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