Every day with Clara just gets better; she keeps getting stronger and healthier and more and more fun. I had such a great time with her today. The sedative wean is going well - she's tolerating it and was awake and alert so much more. Today for the first time, she really felt like a typical six week old baby and not a critically sick one. She's doing so many of the things that a healthy baby would be doing now: responding to my voice, tracking with her eyes, and SMILING! Yes, today there were several smiles that I really believe were real smiles, not just gas or coincidence. It was so wonderful to see her awake more and begin to feel like I could even get a sense of her personality. I think she's a really happy baby. Except for when I was pumping, at rounds, or having a lunch break, I had Clara in my arms all day. It was many hours of snuggling, singing, talking, playing with finger puppets, and a few naps (for Clara - not mama!), too. I gave her a good lotion rub down and she seemed to really enjoy the massage (I hope it will help some fluid get movin' too!). We did her OT oral exercises several times throughout the day (I might be an overachiever) and she did great with them. She tolerated being held great and we didn't have to turn up her oxygen for desating any. Granted, it was set at 80% most of the day, so it's still pretty high, but I think it's worth it if it helps her spend time out of bed and moving and interacting. All of her medications are being given in oral form now so her peripheral line was taken out of her foot and her broviac was hep-locked. They moved her OG tube from her mouth to a NG tube going into her nose (that's her feeding tube), so now her mouth is completely free. The lactation consultant came by and we gave our first little lesson in breast feeding. Clara did well, all things considered. We've got a long way to go, but I'm determined to be persistent and not get discouraged. She didn't latch on today, but she got to taste some breast milk and "play" a little. The LC said that she's not hungry since she's on continuous feeds and that you can't get a baby to eat if she isn't hungry (that's not a problem for me!). So, tomorrow we'll turn off her feeds for just a little while before we try to breast feed and see if that makes her any more interested. She was on 50% breast milk and 50% formula in her feeds today and tomorrow we'll go to 75% breast milk.
Probably our biggest immediate concern for Clara at this point is her pulmonary edema (swelling, fluid). She was up to 5.15kg (11 pounds, 5 ounces) today and we're estimating her dry weight at somewhere around 4.5kg (9 pounds, 14 ounces). So she's got about a pound and a half to lose. There's no magic cure for this, just patience and time along with the max dose of Lasix that she's already on. She does also have a tendency to be tachypnic which just means her breathing rate is sometimes very fast. That is probably related to her wet lungs and we're hoping it will resolve itself with time. Today I discovered that she loves having her back scratched and if she is tachypnic, her respiratory rate would almost always drop back down if I started scratching and rubbing her back. I love getting to know her and her little tricks and idiosyncrasies. As the fluid leaves her lungs and she recovers from all the trauma her body has been through we should be able to wean her oxygen levels and flow. In the meantime, we'll keep working on OT and PT, give her lots of time out of bed, continue trying to introduce the breast, and keep weaning her sedatives as she can tolerate it. Patience is not my strength, but if we have more days like today while we're "waiting," I'll be happy. She was so much fun!
Here are just a few photos from today. It's harder to get pictures of her when I'm holding her all day long. :) But I want for you to see how good she's looking, too. Actually I think there was a pretty significant difference in how she looked from the beginning of the day to the end. I think some of her swelling went down just during the 10 hours I was there.
|First thing this morning - hanging out on the Boppy. She still has her OG in her mouth and you can see how her right eye is swollen a bit. That was gone by the end of the day. (She's also still in yesterday's outfit.)
|Check out my double chin
|Playing with a monkey finger puppet
|Wardrobe change! Duckies today... (thanks, Auntie Sarah! It's a newborn size, but we still squeezed in it!) Clara was very thankful that I forgot the matching hat. She apparently hates hats.
|She really is so cuddly.
|A girl's gotta color coordinate
|Feet and fanny
|Daddy snuggles to end the day (notice the tube gone from her mouth now!)
|She is looking so good!
I can't wait to see what blessings tomorrow will bring.