the photo we’ve been waiting for. And some good news too, Oliver weighs 14 lbs! He finally made it past 13!

Oliver ate today! Claudia put some mashed sweet potato onto the lid of the jar and Oliver gobbled it all up! She gave him about a tablespoon and a half in all, with a little spoon. At one point a chunk made its way to the back of his throat and he stopped playing. He didn’t gag, but he definitely noticed. After a little while, he resumed playing. Claudia is ecstatic!

I’m hoping she’ll send me a photo of him with food all over his face soon.

Claudia took Ollie in for his regular appointment. The therapist was pleased with his eating progress. She told Claudia not to worry about what it is that he is interested in, and that the process is more important than the nutrition aspect. The whole question came up because they gave Oliver a piece of bacon last week and he really enjoyed exploring it. Normally one would not feed their baby bacon, but in Oliver’s case this was actually a very good idea. Babies with oral aversion are known to prefer foods that are flavorful. Who wants a mashed up avocado when there’s bacon around? This doesn’t mean that Claudia is going to start making bacon for him, just that she should continue to take advantage of times when he seems interested in what they’re eating. Any time we can create a positive oral experience for him, we should most definitely do it. That is how he will get past his oral aversion. She told Claudia to give some of those stage 2 baby foods a try, but not to push it at all. If Oliver turns his head away, it’s time to stop.

The OT said that Oliver’s fine motor skills are advanced, and that his gross motor skills are still behind, but not by very much. She thinks that in the next 4-5 weeks, Oliver will be sitting up by himself and/or crawling. How exciting! 

Friday Oliver had his routine appointment with Dr. Rosenthal. In the echocardiogram, Dr. Rosenthal found a mass of cells about 1 mm away from Oliver’s ballooned valve. The mass was probably there at the last appointment, but they can’t see it unless it’s at just the right angle. If the cells continue to grow, they have the potential to block the flow in that valve, and Oliver will have to go to surgery right away. Also, Oliver is not eligible for another ballooning now. Dr. R told Claudia that another ballooning was not in the plan anyway. Dr. R was not able to say what procedure Oliver will be eligible for now, but he said Dr. Reddy would still be his surgeon. He told Claudia that this happens in about 10% of patients with aortic stenosis. It’s a wait and see situation.

I visited the Yores today and Oliver looks good. His skin is rosy and smooth. He looked so amazingly happy! Maybe having the oxygen off his face, or the tube out of his throat, maybe being back home with Bella and Nathan, or feeling better after surgery or teething, or not having reflux anymore, I don’t know what it is but Oliver is clearly loving life!

He’s sitting up by himself, but sometimes topples over. He weighs 13 pounds 12 ounces. When he was in the hospital they didn’t give him his Aldactone, so that’s why he didn’t appear to lose much weight. Now he has been shedding that excess fluid that he stored up and his weight has stabilized. He looked to me a little fluid-influenced, a little sunken. Not much but just barely. I’m sure he’ll even out again soon. He’s barely sore anymore, and only complained a little when Claudia started his feed. I wasn’t there to see that part, but I did watch her feeding him and it took only 5 minutes or so. The milk goes in through a short little tube, by gravity. It comes right back out if his tummy is not ready. While he was being fed, aunt Mo was playing a game with him, where you clench up and make a straining sound. It’s hilarious to him. Anyway he was playing this game, and clenched his stomach, so the milk came back out. No big deal, it just goes right back in. It’s really time-saving compared to feeding through the NG. The spitting up problem looks like it has resolved too. It only happens now about once every 4 days, usually if he is upset about something. Ollie is still very attached to mommy, and gets anxious even if she’s in the same room. I think this will last a couple of months.

While I was there, Oliver did something wonderful. He swallowed a little bit of milk from a bottle. It was clearly an accident; he likes the bottle, he likes the taste of milk, but he’s uncertain when it reaches his throat. I could see in his face that he was bothered by it, and he looked like he might gag for a second, but then he just let it go and kept playing. What progress! This is exactly how Oliver will overcome his oral aversion, by accidentally swallowing and seeing that it’s OK, that his body didn’t spit it up and it was no big deal. He also chomped on a celery stalk a little, putting it into his mouth two times! He has two little teeth now, in front on the bottom. Whether it’s because chewing feels good on his teeth, or he’s just more comfortable now that there’s no tube in his throat, Oliver is definitely making good progress in overcoming his oral aversion. Tom and Claudia have made it a priority to give Ollie food to chomp every single day, every opportunity, and I can see that their dedication is paying off.

I have some photos to post but it’ll have to wait until tomorrow. Meanwhile, here’s a photo Claudia just sent me. Wow, look how much of that cookie is eaten! I wonder if Oliver ate all that?!

Claudia says Oliver weighs 13 pounds 14 ounces. Wow! On the day of his surgery he weighed only one ounce more. It can’t be that he lost only one ounce from not eating for three days. So that must mean that he is rapidly gaining weight already, since he has only been eating for 1.5 days now.

Claudia likes the G tube so far. You can put the food in more quickly, so I think it takes less time. You know right away if his tummy is full, and then you can wait a few minutes before continuing the meal. Best of all, Oliver has not spit up even once! So all the calories going in, are staying in. I’m sure Oliver is happy to have his face free again too. One challenge that Claudia foresees is that Oliver could get interested in his G tube when he sees her using it, and might be tempted to play with the attachments. She’s trying to distract him while she puts in the meal, because he is a little sore. He complains some when the meal starts up. The nurse that came this morning told Claudia that this is definitely temporary. He’s also just sore in general, under his arms and everywhere. But overall, he is doing very very well.

Claudia says they’re going home, once Ollie gets his Sinogist (sp?) shot and gets his IV removed.

***

They did get to home! Yay! They left the hospital at around 5:30 today. Here’s an adorable photo Claudia sent me this morning.

Claudia says Oliver finally was fed, this morning at 9am, 40ml of breastmilk through his G tube. At 11:30, he took in another 50ml. His next meal Claudia plans to give him 80, and by 4:30 he should be up to a regular size meal. Claudia has taken charge because things move so slowly there. She refused to begin with Pedialyte. They wanted to increase only 10ml each meal but she knows Oli better than they do and there’s been no problems so far. She talked to the surgeon on her own and told him Oli did great with his meals and he agreed that it would be OK to take the stitches out today. Now she is working to get that IV out. His meds are all oral now so it’s only being used for sugar water. The nurses told C that he has it to prevent dehydration. Yeah it made no sense to her either, given that he’s eating now! Once that is out, there is no reason for him to be at the hospital anymore. C is pushing to be discharged today but I have my doubts. But that would be great if she can pull it off. As for Oli, he is much peppier now that he has yummies in his tummy. He is playing a lot more.

Ingrid is sick today so unfortunately we won’t be at the hospital. Mom says that Oliver is doing well, even better than yesterday. He is back to himself, not lethargic anymore. They did get a room on the “floor”, shared with one other patient. They didn’t get the window/bathroom side but it’s still a step up from the PICU. Their roommate is quiet and that’s a real blessing. 

Now some good news and bad news. The good news is: Oliver’s face is still naked, no NG. The bad news is: they haven’t fed him yet! He seems to be OK in spirits, but he’s bound to be feeling hunger. Obviously Claudia is not happy about this and mom says she is letting everyone know. We’ve learned from experience that things take a long time to happen on the third floor. You have to be persistent to get things done.

Oliver had a good day overall. A couple of times he complained. We of course don’t know the exact reason, but we think he may have been hungry (he hasn’t had anything in his stomach since Monday morning), or feeling groggy. He didn’t make any indication that his stomach was hurting, although he did pass some gas. The doctors told us that for the surgery they had to inflate his stomach a little with air in order to be able to see better in such a tight space, and it was evident after surgery that he was distended. Today he looks much better, just puffy. He was very lethargic too, perhaps from the anesthesia still wearing off or from the morphine he had early this morning. We could also look at the fact that he didn’t require any pain medication today as a sign of good healing. I noticed that his legs seemed restless but he did eventually fall asleep.

One thing that I know made a HUGE difference to him was having mommy there. They were cuddled up pretty much the whole day long in the hospital bed. Claudia had to sign a release of liability to be allowed to sleep with him and she spent the day in bed with him as well. Whenever he was tired, he would put one of his arms out and touch her, to make sure she was going to stay while he slept. Whenever he woke up the first thing he did was search for mommy’s face. The relief was so obvious that you could see it on his face. There was one time when Claudia took a bathroom break and he slept in my arms instead. Unfortunately someone pulled the curtain back sharply and he woke up, and immediately looked around for mommy. He didn’t see her and he cried bitterly for about a minute until she came into the room. Claudia told me that he is going through separation anxiety anyway, at home, and I know this is the time for that, because Ingrid went through the same thing starting at around 9 months. 

All of Oliver’s numbers were good today. He did not have oxygen at all today and he sat’d in the high 90s to 100 all day long. His heart rate is a little higher than usual. But everything is expected to be “off” today as he recovers. He was warm from his heart beating faster, and very lethargic. In the late afternoon he woke up for 20 minutes at a time and played a little, sitting up. He even smiled a couple of times. I marveled at seeing his naked little face for such a long time! He just looks so much bigger that way. He didn’t really make any indication that he knew his face was naked, I think he was too out of it for that, but he did enjoy pulling on some of his leads. I never saw him touching the site of his surgery or even looking at it. The oxygen probe on his foot had a bright red light and he stared at it several times today. They removed the arterial line that they had in his right arm, and all the splint and bandaging that came with it, and now he can freely move that arm. That line was only in place because of the surgery and it only remained today for monitoring his blood pressure. There’s a line in his left arm still which they’re using to give him his diuretics (they don’t want even medicine to go into his stomach yet). That should come out tomorrow once oral feeding is confidently resumed but they might leave the line in place if they feel they need to have one for emergency access. I’m sure Claudia will have something to say about this. The staff at the PICU have been true to their word and Oliver has not received any additional interventions, and has only had blood drawn once each day.

Tonight doctors plan to give Oliver his first bit of oral nourishment. He’s been taking IV sugar water all day, but tonight they will put the NG back in (actually, Claudia will) and feed him some Pedialyte. If he tolerates this, they’ll move onto to breastmilk alone in the NG. After 48-72 hours post surgery, they’ll try the G tube for the first time. Dr. O told Claudia and Tom that Oliver will lose something like an ounce and a half per day while he’s not eating, so let’s hope it goes well. Tonight Claudia and Oliver are moving up to the third floor. He is no longer ICU status, and we were pretty much ignored all day long. They just didn’t have a bed for him upstairs yet. When I left the hospital at 5 they were getting ready to move him. I’m keeping my fingers crossed that they’ll let her sleep in bed with him again even though it’s atypical.

Thank you to everyone who is helping with the kids. It is such a gift you are giving to Oliver, to allow his mom to be with him 24/7! Thank you Dan and JoAnn, parents of Bella & Nathan’s playmates, Maureen and Jeff, and everyone else I’m forgetting.

Here are some pics from today. Sorry about the blurry one. It was such a great moment.