It's been just over a month since Eddie was born and I've been awful about posting updates. Most days it doesn't feel like there is much that's changed, but somehow in the course of 4 weeks, absolutely everything has changed, just a little bit every day.

So far, NICU life has been all about supporting Eddie's development, physically, mentally, and emotionally  in order to prepare him for going home. In order to go home, there are certain milestones that need to be met. Eddie is working his way through these milestones like a serious little fighter.

1) Get to 4lbs

In order to ride in a car seat, babies have to be at least 4lbs. Eddie is growing so fast!!! He's gaining weight incredibly well and is already at 4lbs. 4oz. 

2) Maintain his own body temperature

Preemies often don't have enough fat to keep them warm, and regulating their own temperature is very energy consuming, so Eddie was in a temperature controlled "isolette" (incubator) in order to regulate his temperature, allowing him to focus his energy on growth. For the first few weeks it was also humidified to keep his immature skin moist and protected. Last week he finally graduated and the top to his isolette was opened, allowing him to be in room air at room temperature and he's doing great with it! He actually tends to run a little hot, so we can't bundle him up with too many layers.

3) Get off breathing support

The very first two days, Eddie was managing his breathing really well, but that quickly changed on day 3 and he had to be intubated in order to give him a dose of surfactant, which is kind of like a lubricant to help the lungs function better. It was a difficult procedure on such a small baby and it took 3 attempts to be successful. But almost immediately, the surfactant started helping Eddie's breathing and it continued to improve every day after. He has been on a series of different types of breathing support since then, most recently just a CPAP, slowly reducing his levels and the amount of oxygen provided. For the last week he has been on the lowest CPAP level at room air (no supplemental oxygen). Most days he gets breaks from his CPAP for a few minutes at a time while we change his mask and his diaper and clean his skin behind his ears and under his chin. Today he was taken completely off the CPAP for a trial of breathing on his own and stayed off for 5 hours before the doctors were concerned about his blood oxygen saturation and put him back on.  It was a great attempt at the next big step, but his little lungs just aren't quite ready. We'll try again in one week and he'll receive a small round of steroids to reduce any inflammation that he may have in his lungs and to give him a little jump start to breathing completely on his own. He's so close!!

4) Spontaneous Events

Almost all preemies have issues with managing their heart rate and have trouble with breathing and blood oxygen saturation. This causes them to have what is referred to as spontaneous events, where either their heart rate drops very quickly, they stop breathing, or they desaturate, or often all three as they are very related. These events can be pretty scary and watching the monitors and hearing different tiers of alarms quickly becomes the norm. In order to go home, Eddie needs to have no major spontaneous events for 5 days. Before today, Eddie had gone 4 days without any major spontaneous events that needed intervention. With the stress of removing the CPAP, he had a few very quick bradycardia events and multiple desaturation events. Given how well he has been doing overall, I would expect that he will continue to see great improvement as the next week progresses. 

5) Get off the feeding tube

In order to get off the feeding tube, Eddie needs to be able to take milk either from the breast or bottle in a quantity large enough for him to continue to grow. This may sound easy, but being born 11 weeks early, he skipped almost all of the practice of swallowing and breathing in the womb that most term babies would have. He also has less ability to "organize" or manage multiple functions at once and has significantly less energy and stamina. It's a very slow process as he's learning to manage protecting his airway, sucking and swallowing all at the same time. We've been slowly working up to it using cotton swabs soaked in milk and pacifiers with small droplets of milk to get him adjusted.  He also gets to build his stamina using his pacifier. Every day he makes progress and he's graduated pacifier sizes 3 times. We've started introducing him to the breast when it's empty and he's learned to latch and suckle a little. It's great progress, but a slow process. Once he's off the CPAP, this will be physically easier to do and will also become a higher priority.

Overall, Eddie is doing absolutely fantastic!!! All of the therapists and nurses rave about how alert, active and engaged he is. He's ahead of the curve on almost every metric related to his learning, mental, and emotional development. He is super sweet and loves to interact with almost everyone that comes in the room. His wide-eyed gaze and big smile are infectious to everyone, not just his mama. He's becoming quite strong and is already showing off how smart he is. Once he learns something new, there's no stopping him, including removing his own feeding tube from his mouth, pulling off his CPAP, grabbing his toes, and sucking his fingers. There have been a few small bumps in the road and there is no guarantee of smooth sailing from here, but everything is looking promising and Eddie is already such a positive bright light.

I just want to say thank you to everyone who has kept us in their thoughts and prayers or who have provided support with caring for the pets, providing meals, sent cards or notes and inspiring loving messages. I know I haven't been able to reach out personally to everyone, but trust me, your love and support has come through loud and clear and I know that it's had a positive impact on the outcome thus far. It's helped me to keep a positive attitude and allowed me to focus all of my energy on being with Eddie and working through the daily exercises the therapists have taught me to do with him. There's no doubt that the impact its had on his development has been significant (I have been told as much by many of the professionals at the NICU) and I believe it will get us both home sooner, happier, and healthier!