One week post-op yesterday and Ruby is doing everything she needs to be. She took 4 bottles in a row! She can't stay awake to take the whole volume so we give her the rest through her NG tube but it's getting better and better every time.

We stopped her pulmicort nebulizer (a breathing treatment) and her RT officially delegated her respiratory care to her bedside nurse. I thought for sure I would be giving Ruby nebs at home. My baby, born at 23 weeks, 4 months early, is going to go home on a milk fortifier and vitamins. That's it. Pretty amazing.

And another thing: look at her cheeks.

4 pounds 11 ounces today

Do you think they'll kick us out if we just start sleeping here?

Ruby is 4 pounds 10 ounces today. Up 0.6 ounces from yesterday.

We had a good long day today. As long as she is awake, she gets to try eating from a bottle. Today she got 10 mls of breast milk every 3 hours and so far 2 of the feeds she took the entire volume. That's good. Tonight we go up to 15 mls and then up by 5 mls every 12 hours as long as she tolerates it. Our goal based on her weight right now is 40 mls every feeding. When we get there, we get to get rid of her TPN (her IV nutrition) AND her PICC line. Then we are going to add a fortifier to the breast milk to give her extra calories. Then: home.

Ruby is 4 pounds 10 ounces today.

She has been doing really well since surgery. We extubated her on Sunday and by Sunday night we weaned her off the nasal cannula and on to room air. Yesterday she pooped the normal way (our nurse saved it for me) and the surgeon said to start feeding her.

I wonder what we're going to do today.

Everything is good and all Ruby's guts are back on the inside. She had to be intubated again so right now the goal is to wean her off the ventilator. We are really close. I think it will be this
morning. Then she gets to eat!!

She's in the OR now.

4 pounds 9 ounces today

Pedialyte for breakfast and by 10 it seemed she was not happy about it.

4 pounds 9 ounces

I spent all day with Ruby today. I had a few things to do for work and I brought my computer and held her for hours until I was all done. Then I fed her a bottle and she was totally in to it. Her OT said she feels like she likes to eat. It sounds silly but that's a big deal since she's had a lot of negative things going on in & around her mouth in her little life.

Russell came at around lunch time and gave her a bath and snuggled her until he almost fell asleep. It was another good day.

We can expect tomorrow to be a little rougher. I'm going to bed now so I can hold her all morning before we go to the OR. I thought about asking Ruby's surgeon if I could scrub in. You think?

And as promised. A picture of the stoma. Let's stuff those guts back in there!

I promised a stoma pic today and I didn't take one. I'm sure you are all sorely disappointed. It's okay. I have an extra day to capture it on film. We didn't manage to get Rubes on Thursdays surgery schedule. We will be headed in to the OR at 10 am on Friday.

Today she had to have a gastroview enema. They use contrast to make sure her colon is still patent and we don't have any obstruction or anything. Her nurse and her RT went to radiology with her and she did just fine and everything looks good. I was there right when she got back and we snuggled for the whole afternoon. Man, there is nothing better.

4 pounds 7 ounces today

But the best news of the day - our NNP said home in 2-3 weeks. The first time anyone has given us a guess.

We had such a good day today. Russell went and saw Ruby this morning before he went to class - SO early. He reported weight gain AND the fact that Ruby stayed on room air all night long. A good start to the day.

I started a nursing research fellowship through work today. It was just a bit of an introduction but it got me really excited about everything and I can't wait to get started on my research project. It was especially excellent because it was done pretty early and I was at the hospital to snuggle by lunch time.

I talked to Ruby's NNP and saw her neonatologist, too. Both were so excited about her being on room air and felt good about her weight gain over the last few days and even felt comfortable increasing her total fluid volume intake (which translates to more breastmilk). About an hour later, Ruby's surgeon, Dr. Kurnow, came by to check her out. Her stoma has been prolapsing, sliding out, a little bit more and more as she grows and gets bigger. The risk is that it will slide out so much, that she will start to lose blood supply and that tissue will start to die. Dr. Kurnow doesn't feel like the benefits of waiting until Ruby is 3 kilograms outweigh the risks of complications involved with waiting until her bowel tissue is not as healthy. So we made the decision and we're going to surgery to put Ruby back together on Thursday. Russell and I both feel really good about the decision, in fact, when I got home, Russell literally did a dance. This will likely get her home a couple weeks earlier than we thought.

A little advance warning: tomorrow, I'm going to post a picture of Ruby's stoma. It is basically about an inch of her guts that comes out of a small incision on her stomach. Heads up.

Notice something missing?

4 pounds 6 ounces, down to 1/4 of a liter of O2, and she took 14 mls of breast milk from a bottle. She has half a degree to go in the isolet and then we get an open crib.

Ruby was 4 lbs 5 ounces this morning.

Not much else to report. Her orders are to wean her oxygen as tolerated. And that's about all that's going on.

Russell changed her diaper tonight and said it weighed 60 grams so I'm not feeling optimistic about weight gain tomorrow - be crossing your fingers for another ounce, will ya?

Ruby gained a gram. One gram. That's pretty wussy. The docs say that with the number of calories she's getting, she should be gaining and she's just not. We're going to make some adjustments today and so we'll see if it makes a difference.

On a much more fun note, Ruby got her first hair things (more like head things) today. I had too much fun with them all. Sometimes I wonder if the nurses and doctors get annoyed because I kinda want to play with her like a doll all the time. Is it always appropriate? Probably not. But I do it anyway. Like today when I tried 10 different headbands on her.

4 pounds 4 ounces today

We tried to wean down to 1/4 of a liter of O2 today but she wasn't quite ready to give up the extra quarter. Russell had his turn to bottle feed her and she took 10 mls. Best so far. She did a good job coordinating everything and that was our big event of the day.

We snuggled for a long time.

4 pounds 2.3 ounces today AND down to 1/2 a liter of oxygen.

Ruby had her first basin bath today. She didn't get real mad at us and she was wide awake, just checking everything out. I'm not going to lie, it was totally fun. It was me and her nurse so we didn't have any extra hands to take pictures. We will next time.

Ruby's 2 week post-op eye exam was yesterday and the ophthalmologist said everything looked spectacular (exact words) and she would see her IN HER OFFICE in a month.

We're up to 4 pounds 3 ounces today!

Ruby got to drink from a bottle today for the first time. She tired out pretty quickly but she sucked and swallowed and breathed. The occupational therapist said she did really well for the first time. She gets to drink from a bottle once a day now. If she can do it, we can take her NG tube out so we're rooting her on. Ruby's fluid intake is still kind of a big consideration and we have to keep close track of how much is going in and how much is coming out. That makes breast feeding a little difficult (I'd say that was about 15 mls... Hahaha) but I think we should be making some attempts at that this week, too.

Another big deal, we weaned her oxygen down again today. We're on 3/4 of a liter!

Today: 4 pounds 1.7 ounces

We weaned Ruby off a little more oxygen today; down to 1 liter. It's still a lot for such a little thing but less is less, right? She gets 24 mls of breast milk every 3 hours. Russell swears she gets hungry right before. Today her nurse said that Ruby let her hold her without getting all snarky about it. That's what they call it around here - snarky. And Russell and I held her tonight and passed her back and forth and she didn't even really seem to notice. This is a major change from just earlier this week - her oxygen saturation would drop if someone walked behind the chair you were holding her in.

It's my Friday tonight and I am going to stay up all night and then I'm coming back here to snuggle her until I cannot stay awake any longer.

Ruby is officially 4 pounds today plus an ounce. She is still on her nasal cannula, no CPAP mask for a couple days now. She got a new kind of bed last night. This is the transition bed from isolet to crib. On this bed, they can gradually adjust the temperature and when they get it down to room air temp and they know she'll tolerate it, she gets a crib! The fact that I just put an exclamation point at the end of that sentence gives me an excellent segue. Our milestones are not major the way they were when Ruby was sicker. Before she was even a week old, Ruby had an intestinal perforation and a surgeon repaired it by giving her an ostomy. Before we can go home, we want to put Ruby's guts back together but before we can do that, Ruby needs to weigh 3 kilograms or about 6.5 pounds. This is my explanation for the focus on weight gain. Since the progress could be a little slow (who are we kidding, it's painstakingly slow), we are going to celebrate every seemingly insignificant change. Every. Change. My apologies in advance.

Ruby didn't keep up her 4 pounds, the little bum. She seems like she's over her traumatic immunizations and she's back on her cannula.

Her docs aren't really satisfied with her growth over the last week. It's adequate but not excellent so we are trying to figure out the best way to give her all the calories she needs to grow.