Coping, Heart Defects, Hospital Stays

Six Truths of a Long-Term Hospital Stay with your Little One

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During the first year of Maddie’s life we spent close to two months in the hospital. At different times, we were in the NICU, the cardiac ICU, on the neurology and cardiac inpatient floors, and we did an inpatient and outpatient stent for two different surgeries. Those days were some of the most challenging, confusing, exhausting days of my life. But we made it through, and we even managed to find moments of levity between the moments of stress and terror.

You learn the routine

We spent most our time at Cincinnati Children’s Hospital Medical Center (CCHMC). Like most hospitals, the doctors begin rounding early in the morning. CCHMC takes a multidisciplinary approach to care, and depending on your child’s condition, the team that rounds may have up to six clinicians or more. For instance, in the NICU each morning there was an attending physician, a nutritionist, a cardiologist, etc. Most days we would know what time the team started rounding, but we would never know exactly when they were coming to see us. Although we were always eager to speak with the doctors, we quickly learned that the later in the morning the team stopped by (and the smaller the team), the less serious the patient’s condition. For instance, on our first day on the neurology floor after
Maddie’s seizures began, we had a huge team of doctors who showed up around 7:30 a.m. On the day we were discharged we only saw one physician, and he did not stop by until close to noon.

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Rounding on the Neuro unit. Maddie had bronchiolitis, so every clinician who entered the room had to garb up to reduce the risk of infection in other patients. 
Continue reading “Six Truths of a Long-Term Hospital Stay with your Little One”

Celebrations, Coping, Development

Comparison is a four letter word

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Next to the actual diagnosis, comparing Maddie to other children is perhaps my biggest struggle. And I know this struggle is not isolated to parents of children with special needs. Many a mom friend has mentioned to me that they’re constantly comparing their children to others their age. Are they achieving at the same level? Are they growing, walking, talking, eating as much as the neighbor child? In fact, years before I became pregnant, one of my best friends described to me that, as a parent, you always want your kids to be the best: best dressed, best looking, best in the class. Continue reading “Comparison is a four letter word”

Celebrations, Vacation

Babies need vacations, too!

17457481_10104888937756462_1530028310908054299_n.jpgI had another blog that I was planning to post this week. But it’s a pretty heavy and challenging topic. And it just didn’t seem right to post it when Maddie is having such a PHENOMENAL week!

We took a much needed eight-day vacation to the southern Caribbean last week, and it seemed to do wonders for her. For the first time she’s babbling with some definite consonant sounds. And she’s moving more- lots of side sitting and lifting high when she’s on her belly! Even the teachers at daycare have noticed a big difference! Yesterday one of them said that it was “like a whole new Maddie” came back from the cruise. She noted that maybe even babies need a vacation.

The funny thing is that we didn’t do any therapies while we were gone. We normally spend time each day stretching and focusing on new skills as instructed by our therapists: sitting on her knees, being on all fours, transitioning, etc. Needless to say, she does not look forward to these exercises. In fact, she’s actively learning ways to avoid doing them. I can’t lie; I don’t look forward to them either. I feel guilty day in and day out because it never seems that we’re doing enough (but that’s a whole other blog post…) Continue reading “Babies need vacations, too!”