So Many Firsts

Avigayil has been home now for two weeks. It has been an interesting time. We are getting to know each other and looking for our new normal. She is a generally quite and easy going baby. She loves movement and loves to go outside. She loves all her siblings but seems to especially like spending time with Shimmy, our 7 (and 1/2!) year old.

Sometimes people think that coming home means its over, that everything is ok. This is far from the truth. Although Avigayil is getting stronger she is still having difficulties. She is still on oxygen and is currently not gaining any weight. That means that I am still pumping and we have to wake her ever three hours to feed her, something no parent in their right mind normally does.  We are currently going to the well baby clinic once a week for weight and a check up. This will continue for 8 weeks and then we will have a two week break before she has to start going every few weeks for an RSV shot (more on this closer to the winter). We are davening that she starts to gain weight soon before more drastic measure as required.

Someone sent me something that said "Being a preemie mom means doing things other people don't understand". Looking back on the last two weeks I see how really true that is. Our list of first is quite different than other people's. We had our first pediatrician visit, first visit to the pulminologist, neonatologist, physical therapist, preemie clinic, well baby clinic, pediatric day hospital, GI, and our first trip to the ER (I'll tell that story soon I hope). We had our first sleepless night because her monitor kept going off and our first oxygen concentrator mishap. In a few weeks she will have her first cardiologist visit as well. I also can't tell you how many conversations I've ended with "gotta go the baby is turning blue." (By the way, that is the fastest way EVER to get rid of a telemarketer.)
 

Going out with Avigayil is also different. My diaper bag includes nasal canulas, medical tape, granuflex, SpO2 sensors, sensor sleeves, syringes, medicines, suction, charging cord for her monitor, a medical file, emergency contact info fr the oxygen company, and oh yeah, diapers. We had to get a new stroller that would hold her oxygen tank and monitor (I love it, thank you grandpa). Outings are determined by how many people will be at any given place and how much oxygen we have left.

On the plus side we are now on a first name basis with all the local and regional pharmacies and we get special treatment at the well baby clinic and at our insurance office and nursing clinic. Additionally, "I'm running low on oxygen" helps get me to the front of almost every line (we have many bureaucratic offices to visit in the coming month I hope it works there as well). 

In short, life has been extremely busy and crazy, but we are hoping to settle in some time soon. Things are starting to get more routine, even all the doctors visits. IY"H (Please G-d) she should start to grow and gain weight and should continue to get stronger and healthier.