Holding Pattern

Always wide-eyed!

Hannah is growing! Friday, January 5th she was 8 lbs 14 oz (finally surpassing her birthweight) and a week later, on the 12th she weighed in at 9 lbs 7 oz. That's more than an ounce a day! Hooray!

Hannah is a good candidate for the RSV prophylactic shot.  Even though she isn't a preemie, she qualifies based on the criteria that she has a muscular condition impairing her ability to clear mucus secretions.  The doctor told me that there has been an RSV outbreak this week especially, which makes me nervous because I took her to the grocery store on Thursday. We are crossing our fingers and praying that she stays healthy and we don't have another hospital stay! We are hopeful that the insurance company will approve the RSV vaccine. Even though it is astronomically expensive for a shot, it is much cheaper than another hospitalization.

I also talked to the doctor about Hannah's feeding and oxygen. She's doing really well with a very low dose of oxygen, and for 15 minutes without it, her sats dipped into the high 70's/low 80's.  So we're going to keep her on oxygen for now.

I shall call her squishy and she shall me mine.
And she shall be my squishy!

With regards to nutrition, she's doing well at the amount of calories she's getting. She's been on a 24 hour continuous feeding schedule since December 5. So of course she doesn't ever get hungry.  How many 7 week old babies do you know that sleep 10 hours every night!? But of course the 24 hour feeding schedule must come to an end at some point. Starting last Friday, we are condensing her feeding into 23 hours, and giving her a one-hour break. Then after a week, we will condense her feeding into 22 hours, and so on, so that she can gradually get used to a larger volume in her tummy and alternately feel hunger. She'll still be getting the same volume and number of calories, but will have 1 hour breaks throughout the day. We expect this might be hard for her, and for us it might be a lot like having a one week old baby again.  But it's inevitable and we are glad to make some progress!  I decided to take out an hour in the middle of the night, from 2 to 3am, theorizing that she is sound asleep and might not notice. If she can keep her sleeping-all-night status during this transition, we'll all be much happier.  So far so good!

First smiles captured on camera!

Developmentally, Hannah is right on schedule. She started smiling this week and it is such a sweet, happy smile! She doesn't seem to mind having tubes and tape all over her face. She is always wide eyed and intently focused on the people around her. She wants to make eye contact and is trying to imitate what we do with our mouths.

Daddy making silling faces

As for Mom and Dad, we are surprisingly ok. While the current holding pattern is not ideal in the long term, it is safe and doable. We both know how to take care of Hannah and meet her immediate needs. We are confident that she is getting the right amount of food and that she is going to keep breathing. What a relief! It's such a difference from a couple weeks ago when she was getting sick and we were afraid to go to sleep in case she stopped breathing. We are sharing the load and we are all together at home. We are taking shifts and having meaningful experiences with the other kids. We are effectively co-managing the chaos of a household of 7.  It's not clean or quiet, but like I said, it's a holding pattern. While sometimes we become discouraged by the chaos and exhaustion, we are more often upbeat than depressed.

A brief moment without tubes :)

 We are so glad that Hannah is stable and growing. While it is a lot of working lugging around an oxygen tank and food pump, and for me pumping 5 times a day, we are in a safe holding pattern and Hannah is making progress. We are doing our best to limit her exposure to more illnesses, with obsessive hand washing, staying home, and keeping Lexie away from germ-y places like the mall playground or the church nursery. Of course this also means that I won't get to leave the house much this winter, which feels pretty cooped up.  But Hannah is worth it.  We have been incredibly blessed. We feel the prayers from scores of friends and family and strangers and angels.