Learning the ropes

After four weeks at home with Patrick, Andy and I feel like we're starting to get the hang of things. We're very lucky that Patrick is a healthy little boy, but he has some additional medical needs that make navigating the new parent waters a little trickier. Andy was able to take off three weeks from work, so we were able to figure this all out together. Patrick and I have been unsupervised since last Tuesday, and I really miss having Andy (and an extra set of hands!) here during the week!

When Patrick came home from the hospital, he was 55 days old... but he was brand new to us!

One of the major things that held up Patrick's discharge from the NICU was the fact that he had frequent apnea/bradycardia spells while eating. Once the doctor switched Patrick to nectar-thick feeds, the spells went away and we were cleared to take him home. Each time we make Patrick a bottle, we squeeze a packet of thickener into it. This makes his food look like little milkshakes. The upside is no more choking; the downside is that it takes FOREVER for him to eat sometimes. Patrick has an appointment this week with a speech therapist (yes, we know that he doesn't talk yet!) to have his swallowing studied. Andy and I are hopeful that we will get the all-clear to stop thickening his food. (That will make those middle of the night feedings much faster!)

One packet of SimplyThick added to 4oz of milk, and Patrick has mighty shakes of his own!

Besides the thickened food, Patrick has been on a cardiorespiratory monitor as a result of the apnea/bradycardia spells he had in the NICU. The monitor's cord is about 8 feet long, so for the first two weeks he was home, Patrick stayed within an 8-foot radius all day long. It was incredibly frustrating to not be able to move around with him.

The monitor is the source of all evil in the Linn household.

We have been fortunate that Patrick has not had any periods where he's stopped breathing, or had his heartrate drop. This doesn't mean that the monitor hasn't gone off. We *constantly* have gotten false alarms. Mostly these are when the leads attached to his chest fall off (happens daily). The alarm sounds like a smoke alarm. It's just about the worst sound ever at 3 AM. One night the low heart rate alarm sounded, which prompted Andy and I to jump out of bed and race down the hall like firefighters headed to a fire. It was just a false alarm, but boy did it get our heart rates up! Patrick saw his pulmonoligist last week and because he hasn't had any spells, he only needs to be plugged in when he's sleeping. Yay! We are hoping that when we go back in a few weeks we can further decrease the time he is attached to the monitor.

Patrick's favorite doctor is his orthopedist. Patrick has finished the series casts, and now his club foot is completely straightened out. He had his last cast removed three weeks ago, and now he wears a Mitchell brace. This brace has little birkenstock-like sandals attached to a metal bar. It functions like a retainer after braces - it keeps his feet properly aligned as he grows. He will wear his magic shoes full time for awhile, then the amount of time he wears them each day will be decreased until he just has to wear them for naps and at night.

Clearly, the magic shoes do not get in the way of Patrick's sleep!

While the doctor's appointments have slowed to 1-2 per week, we have yet to be discharged from any of the specialists yet. In addition to the crew mentioned above, we still have upcoming appointments with a cardiologist (heart murmur) and a pediatric surgeon (hernia). Hopefully, Patrick will continue to improve and we can start decreasing the number of doctors in his medical entourage!

Patrick's best friend Ella checks in on him as he enjoys some time in the lamb chair.