"In the Depths of Winter, I Found There Was Within Me an Invincible Summer" -A. Camus

All set in her hospital jammies for dilation #7, Friday 2-10-12

Crinkling a paper bag and excited to see Mommy arrive!

Audrey's seventh dilation surgery yesterday went reasonably well-- and since our surgeon Dr Downey is in Hawaii for a month, Dr Meyers did it for us. She opened her to only a 26 (instead of a 30 like he did last time) because it started to bleed, and left the dilator in her throat for 45 minutes instead of the typical 10, hoping that it might help keep her open longer. She says that the bleeding is normal, it is just an indicator of when to stop stretching. She also gave us a new prescription for Prevacid in order to increase our dose accounting for age increase--- which I was excited about because it could mean less problems for Audrey, except that, once we were home, I realized that the prescription is actually a lower dose than what we already have. So, something somewhere was wrong. I'm trying to figure that out. In the meantime, Audrey is having worse complications from the surgery than we've seen before. Retching and a fever of 101.5 all night in addition to the normal fussiness. It's been a long night.

Even though I just wrote a long post yesterday (for the first time in months), I remembered some more fairly major details I wanted to share about stuff we've learned in the past couple of months. When we were starting to see progress on overcoming oral aversion, she really loved the breast milk from the bottle. I had dreamed of breastfeeding Audrey when she was finally allowed to have milk by mouth, and she did suckle a little for comfort, but in the end, really drinking that way was more than her little mouth muscles were ready for. Just feeling her love for me though, helped make it o.k. Much harder was the realization that I could not go on pumping every three or four hours, and take care of all that needed to be done once school started for the kids and I no longer had our babysitter all day at our home to help with my toddler and house chores. I struggled and wrestled with it, but by the end of December, it was time to accept that moving on from that was best. Well, best for me, and best for the rest of the family. Audrey still preferred breast milk strongly, and to complicate things, in the course of my wanting to find alternatives that were safe for her to eat (since the Nutramigen she gets by G-tube tastes nasty but she had had major digestive issues with the other formulas we'd tried in the hospital) I had her blood tested for food allergies, and we learned that she really is allergic to milk. Not to soy, nor anything else, but definitely to milk. Soooo.... that complicated things a bit. My self-imposed mostly-dairy-free diet for her sake had made the breast milk safe, but... yeah. So, we tried two different soy formulas, and she not only rejected them both, she refused trying bottles at all after that for a bit. We finally had some success with straight soy milk. (Of course, one nurse had to say something about being worried about toxins in soy causing cancer or some such horror. Guess I didn't have enough to worry about.) What. A. Mess. So, guilt about stopping pumping. Big time. But at least my husband is supportive. He has been the biggest champion for the pumping, seriously, as in-- to obnoxious levels at times, shooing me to go pump even when I loathed the thing. But he recognized how intensely stressful it was for me lately trying to manage it, and gave his blessing to the segue. After eight and a half months, it's both very sad and very good to be done.

And sad. And good.


.....guilt. Major guilt.

And major relief.

Hmmm let me think, happy stuff to report? Oh yeah, I forgot! We've had the mildest winter in memory this year... which is really good news for preventing RSV. Some days even short sleeves in January and February. Maybe the thick snow and ice will still come; it's happened before starting late February and lasting far into May. But it's been really nice, and Audrey loves the outdoors so the chance to be out is magical to her. We even had two outdoor hot dog/marshmallow roasts in our backyard--a favorite activity for our fam. In January it was a "snowman roast" with snowman-shaped marshmallows, and that time there really was a decent amount of snow on the ground. (Going to have to make that Snowman Roast an annual tradition I think! The winter & snow didn't bother us much with the heat of the fire, and it made for a really fun change.)

Gotta love that orange Cheetos grin on my oldest.

Then last Sunday we did it again, this time with big heart-shaped marshmallows. I think Audrey was sleeping during the first one, but this time she joined us, and Justin even taught her how to make s'mores.

She got pretty good.

Daddy even let her taste a lick or two.

And then today, Audrey's fever broke early in the afternoon so she was able to attend a little 1st birthday party she had been invited to. She got dolled up with plenty of froo, and she enjoyed the party for about fifteen minutes before beginning to feel sick again. But, it was a cute fifteen minutes. She fell asleep in my arms after that... here's a photo that sort of shows her cute outfit. Her t-shirt says, "I'm the Rock Star of the Family"

Soooo.... back to the present.
Just got off the phone, and the surgeon wants to have her x-rayed to make sure she doesn't have a perforation (tear in the esophagus), so Justin is driving her to the E.R. up at Primary while I'll stay home this time to take care of the other four. (It was a tough choice, we both wanted to go and both wanted to stay-- but after a discussion and a couples prayer, we decided that his safer night driving and beefy arms that are great for babies to sleep in, were the better choice.) So, the story. We thought her fever had broken today, but it came back. Despite round the clock Tylenol it had been 101.5 last night, and this evening I clocked her at 100 between doses. The temperature should not have continued into this evening if it was a reaction to the anesthesia. She'll be checked for pneumonia and a tear, and if she needs to be admitted she'll be right there. Here's my take on how this could play out, based on what I was told over the phone by Dr. Gill (who was taking calls for Dr Meyers today). If it is pneumonia (caused by breathing in her own spit and the barium), she'll be given antibiotics and released. (Except, Dr Meyers checked her for that yesterday and thought her lungs sounded good.) If both x-rays come back negative, Audrey will probably be released with the probable cause being some other reaction to the surgery or a virus-- a pretty big coincidence, if she was coming down with a virus right now, but possible. If it is a minor tear, they'll treat aggressively with inpatient antibiotics and monitoring to help it heal on its own. If it is a major tear, she would require another major open-chest surgery to repair it. The on-call surgeon today is Dr. Black, whom you may remember we have worked with before. Dr. Downey returns to work on Wednesday I think. Breathe in, breathe out. Maybe it's just an ear infection. Justin did just call too, and said that the most recent Tylenol dose put her back into her chirpy self. Hahah... I hope he's right that they're going to laugh her right out of there.

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UPDATE: 11:20 p.m.

Oh, my goodness. No one was ever so happy to learn that their baby has pneumonia! Looks like we can get some antibiotics and bring her home tonight. It's amazing. She sounded good when everyone listened to her, but the x-ray clearly showed a lot of fluid in her lungs. I know, bizarre and twisted as this sounds, but what... wonderful news. When he called and told me, I could hear her babbling loudly in the background, talking to Curious George as she watched the cartoon on Justin's new tablet. Holy cuteness. I so needed that! And then he held up the phone on speaker and let me talk to her, and said he wished we had a video connection because she was grinning and reaching for the phone and so excited to hear my voice. Awwwww.... my baby probably comes home tonight!