9.19.05: is life really settling down?

Who knew it would take so long to post an update? Maybe I underestimated just how busy these little guys would keep us. That, as well as a few technical difficulties, have delayed our first update since Avery has been home.

Time sure does fly. It has now been 7 and a half months since our little groundhogs were born, 3 and a half months since Mason came home and nearly 2 months since Avery finally filled in the missing piece.

Avery is gradually doing better and better. He's been able to sleep so much more than in the NICU and has settled down quite a bit. His growth rate is still slow, but slightly improved from what it was in the hospital. He is currently 10 lbs. 15oz.

Since Avery has been home, the schedule has been full of appointments. Between Mason and Avery there have been 18 office visits and 12 in-home visits. The office visits include specialists such as the ophthalmologist, pulmonologist, a pulmonary team (which includes an RN, RT, dietician and social worker), gastroenterologist, cardiologist, and of course, the pediatrician.

Avery's lungs still have a lot of healing to do. No adjustments have been made to his oxygen level or his breathing treatments, so he remains at 1.5 liters and receives 4 breathing treatments every day. It appears that the plan is to continue to give Avery plenty of extra support to get through his first winter, and then if all goes well, he will begin weaning off of the oxygen in the spring.

The best news that came out of the visits is that both Mason and Avery were cleared of ROP (retinopathy of prematurity) and will not need surgery. It has completely regressed in both of them, so their next visit to the ophthalmologist's office will be in December to check for nearsightedness and alignment issues. Thank goodness we won't have to witness that heartwrenching eye exam again.

The cardiologist is very happy with how both the boys are doing. Mason's hypertension appears to be well under control even as he outgrows the dosage of his two medications. If he still looks as good at his follow-up appointment in December, Mason will likely be taken off the meds completely.

Avery is now taking an acid blocker, Prevacid, and is also on 27 calorie formula. Between the two adjustments, he is rarely spitting up and is eating a reasonable quantity. If he can keep it up, he'll be a chubby baby before you know it.

Mason still shows clear signs of reflux and we have continued to have the dosage of his reflux meds increased as he grows. His growth rate has slowed down a bit, but he's still by far the "big guy" at 16 lbs. 1oz.

Both of the boys are developing both physically and socially right before our eyes.

The first time we witnessed a genuine smile on Avery's face was the morning he was to be discharged from the NICU. Since then, he smiles more and more every day. He has the biggest, most adorable smiles that a baby can have and just one smile from Avery can brighten the whole day.

Avery is also showing good signs of physical development as he is bringing his hands to midline and to his mouth, swinging and kicking his arms and legs, as well as drawing his legs up. These may seem like such minor milestones for a healthy full-term baby, but with a micropreemie who is at risk for so many things, every little sign of normal development is huge.

Despite the social and physical developmental milestones Avery's reaching, we've learned that his risk of being diagnosed with cerebral palsy is high -- at least as high as it is for Mason, of not more. This is due to his long term dependency on high levels of oxygen. Although a firm diagnosis is at least a few months away, Avery is already displaying possible evidence of CP (specifically, spastic diplegia) in his lower extremities. With the help of a few early intervention programs available to us, we are doing what we can to optimize his long term mobility. CP is definitely not the only thing Avery is at risk for, but likely the first that can be diagnosed. We will worry about the other stuff if and when we are faced with it.

As for Mason, he is doing incredibly well and continues to shock everyone who is following his development. Given the severe brain hemorrhage and PVL Mason experienced at birth, it's amazing to see him reaching developmental milestones on or ahead of schedule. He continues to be a very social and vocal little guy and discovering more and more new "voices" all the time, including lots of raspberries. (we think we've even caught Avery practicing raspberries, too.) Mason's also rolling over (he definitely prefers sleeping on his tummy), starting to grab his feet, lifting his head almost 90 degrees while on his tummy, grabbing objects on his own and putting them to his mouth. Again, these activities probably don't seem like a big deal to most people, but we're breathing better with each one we witness Mason do on his own.

By no means are we in the clear with Mason though. In fact, his most recent pediatric appointment revealed a significant spurt of growth in his head circumference. It may mean nothing, except just that - a growth spurt. However, with Mason's previous bleed, he is at risk for hydrocephalus and we need to rule it out. He will have a head ultrasound this Thursday morning. We will keep you all posted.

We are still working on a long-term sleep situation that works for the whole family. We've been sleeping separately for the most part since Avery's homecoming. Usually, Avery and I sleep downstairs and Mason and Mary sleep upstairs. This is so that at least two people in the family can get a good night of rest! Mason has been consistently sleeping from 11pm-7am ... in fact, we often have to wake him up in the morning. Avery is now starting to sleep a 5 hour stretch at night, and his middle-of-the-night feeding is larger and he's able to get back to sleep quicker. We will probably attempt to get the whole family back in the same room soon.

We now have respite nursing care and nanny/sitter help in place which is allowing us to take some naps, unbury ourselves from a backlog of responsibilities, and make occasional contact with friends again. We even had the opportunity on Sunday to see the Sacramento Monarchs beat the Connecticut Sun (... just one win away from being crowned league champions!).

Mary and I both recently agreed that we feel life is finally starting to fall somewhat into place and should slowly but surely work its way into a routine. We also finally feel like we can focus a little bit on our health and regain some of what we lost (and lose some of which was gained!) in the past year since I became pregnant.

We're very grateful for all of the services available to us to help us keep our sanity and also help us keep on top of the boys health and development. We don't know how we'd make it without it.