Yesterday we celebrated Bella’s birthday. It was a really fun party and Bella really did look older. We had chocolate chip cookie cake which I hear was delicious. I could say a lot about how cute Bella is but since this is Oliver’s blog I’ll have to move on.

Oliver looked marvelous, as he always does lately. He was dressed in a “little peanut” onesie and jeans. Those little baby jeans are unbelievably cute on him!

I hadn’t seen him in a while and he looked big. The other thing I noticed is that he is now very steady when he’s being held upright. No more wobbling head or wiggly torso. He has really developed his little neck and stomach muscles. Claudia says he is pushing up with his arms and looking all around. At night, he has moved from one end of the crib to the other while still remaining prone. His hair has grown longer and is darkening again. He is talking like crazy, I mean really nonstop. His voice is louder but not a lot louder. I’m thinking this is where he’ll stay, with a soft voice. But who knows? Still lots of drooling but he doesn’t seem bothered by it.

Oliver was happy and flirty when we arrived. He had just eaten and was tired but interested in seeing everyone. We played with him a little while and then it was bedtime. Claudia took him around to say goodnight to each guest, and he did so graciously. Then, a few minutes later, Claudia came back downstairs with Oliver wrapped up on her chest. I guess Oliver was just not ready for bed yet. She turned him facing out and he stared at everyone, at everything. This time it was the wine bottles that peaked his interest. Claudia went about her business, getting everything ready for dinner. She’d already done all the cooking, it was just the arranging and plating. Everyone was in the kitchen helping and Oliver got to be with us at the party longer. Gotta love those baby wraps.

I got only one authentic, just for me, smile. While mommy was wearing him, I pumped his legs really fast and he laughed. I have to admit I was pretty jealous of Aunts Mo and Jo. They got tons of smiles out of him! I have some really cute photos of them making Oliver smile.

Last night was fun because I got to talk to Claudia and we weren’t in a rush. There was so much help that the party went off smoothly. Usually we have only a few minutes to catch up, and then Claudia is off to take care of business calls, or pump, or help Bella or Nathan. We always talk about Oliver, because he’s so wonderful : ) and last night was no exception. I asked her about her and Oliver’s diet. She’s talking with a new lactation consultant and I wanted to know how it’s working out. She told me she’s still receiving dinners from friends. I know that really helps. Also the housecleaning. There are so many things that so many of you are doing for her, that I don’t know about. I just know the tiny bits and pieces she or mom tell me while I’m visiting. And like I said, there is usually only time to talk about what’s new with Oliver. But I know she is getting lots of behind the scenes help. Especially with taking care of the kids – rides, playdates, volunteering at Nathan’s school, etc. Some of you end up on the blog a lot, because you’re there when I come to visit and so I can blog about you. But I want to acknowledge those of you that I don’t see and write about, because I know you’re doing a lot too. Last night when I saw how great Oliver looked, I felt proud of how we have all come together for Oliver. Claudia and Oliver are thriving, and all of us reading this blog have helped them to get to this place.

I need some time to get the photos together – I took too many again!!! Photos will come later tonight.
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I couldn’t find my plugger but here’s one photo Claudia sent me. I’ll post the other photos in a couple of days.

It’s a really adorable photo, because we can see all of his little face. How handsome he is! He’s at the doctor’s office, getting his NG tube changed.

just a cute photo of Oliver. Mom says he weighed 12 pounds 2 ounces (yesterday) and is still waiting for a couple of teeth to poke through. One of them is just about there. He’s been spitting up the last few days and the doctor thinks he might be sensitive to the broccoli that Claudia’s been eating. Here’s that photo from Claudia.

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A little update from Claudia. It’s actually not just broccoli, but the difficult-to-digest foods in general. Broccoli, cabbage, caffeine, chocolate, spicy foods, etc. She’s been very careful the past two days and Oliver is back to sleeping through the night. Also she says he is super happy and energetic so it seems like that was indeed the culprit. He did spit up once yesterday, but it was probably the car ride and not something she ate. He’s still working on those two teeth. And he’s mouthing everything now. They haven’t started any solids yet. She’s waiting until the spitting up is resolved. The solid food is purely for fun and experimentation, not for nutrition at this point. The OT told her to let him play with it. I wish I could be there to see the look on his face. You know it’s going to be funny. She also told me that Oliver’s eyes opened wide when they walked by the microwave last night in the dark. It’s so cute how he still loves those things that light up. Remember how he used to stare at his monitor in the hospital? I’m so so happy to say, that Oliver is pretty much having a good day, every day!

Oliver passed two tests Thursday, the suck/swallow test, and the state-mandated hearing test. There were no worries about the hearing test, but I’m sure Claudia is relieved to hear that he is able to suck and swallow.

What this means for breastfeeding, I don’t know. Claudia is still pumping like a madwoman every 2 hours. The occupational therapist who administered the test told Claudia that she can skip bottle feeding at this point, and go directly to solids. It seems strange to me, that she thinks he’d tolerate a solid food if he’s still adverse to things being put in his mouth. It makes more sense to start with a liquid like breastmilk orally, and also because there’s nothing more nutritious for Oliver right now, and a solid food would just take up precious space in his stomach, plus I know Claudia would like to be breastfeeding instead of pumping endlessly… but I wasn’t at the appointment, so maybe there’s something important that I’m missing.

I think it must have been a difficult day for everyone, especially Oliver, because I made those appointments for Claudia when Oliver first came home, and I remember they told me that Oliver had to be hungry for the suck/swallow test, and for the hearing test, he had to be tired. They told me not to allow Oliver to sleep in the car. Something about him needing to be asleep for precisely 8 minutes before they wake him up for the hearing test.

Other than that, I hear that Oliver is doing wonderfully!

Ingrid and I just watched Jon and Kate Plus Eight. They had a yard sale and gave all their proceeds to Pediatric Cancer Foundation. I spent my afternoons at Lucille Packard, nearly every day for 4 months, and I’ve seen firsthand the pain these children and their families experience. It is really heartbreaking. How wonderful for Jon and Kate to give to such a worthy cause. Speaking of which, baby Mia finally got her heart! I don’t know if anyone here is following her story, but I have link to her site. She’s a baby who has been through all the same interventions as Oliver, except that she ended up needing a heart transplant. It happened right about the time that Oliver came home.

Here’s a photo Claudia sent me today, from the day of their appointments. This is Dr. Perry, the man who ballooned Oliver’s heart twice. He doesn’t say much, just quietly performs his miracles and transforms so many people’s lives, every day. He was probably really uncomfortable getting his picture taken : )

Oliver’s first outpatient (I love that he is outpatient!!!) visit to Dr. Cornfield happened today. Claudia says it went well. He instructed to decrease Oliver’s oxygen to 1/8 (it’s been 1/4) at nighttime. I’m not sure about the daytime. He wants them to turn off the oxygen during specific activities, like while he’s active at play, and see if he continues to sat at 95 or greater. Claudia already turns off the oxygen throughout the day, but she doesn’t turn on the monitor. She feels fine with it, and Dr. C is fine with it too, but he would like for her to do this exercise to get additional peace of mind. Claudia asked how long will Oliver be on oxygen? Dr. C said until his next visit, which is in February. He said Oliver needs to grow lengthwise, because that’s what will give his lungs the most benefit.

Oliver’s respiration rate is faster than typical. Typical is in the 30s, and Oliver tested today in the low 80s. Dr. C says this will slow down as Oliver’s lungs grow. Dr. C said Claudia can discontinue the Xopenex at night, which she currently administers at 12am and 4am. She can reduce the overall frequency to 3 times a day, and that can all happen at daytime. The other inhaler, Pulmocort, is given twice a day, so there’s no nighttime waking for that one. Claudia will still have to get up at night to pump, and I believe to give Oliver a diuretic. But, the inhaler was much more laborious, because you have to stand there and hold the tube in Oliver’s face for 20 minutes.

Today, Oliver weighs 11 pounds 13 ounces! Yesterday he weighed 11#12, and the day before 11#11. This is a perfect trend. He’s got two teeth coming in on the bottom, but they haven’t broken through yet. He’s been drooling a lot and spiking low little fevers sometimes at night. He’s down to just 5 meds now and for Claudia the routine is easy-peasy. Tomorrow he’ll have his suck/swallow test. Oliver’s current big interest is his feet. He’s also talking up a storm.

Sorry no pictures today, just information.

Cecilia and I snuck in a short little visit today – it was so worth it. Oliver looks great! He weighs eleven pounds 6 ounces. Dr.O (pediatrician) increased his feed volume to 650mL/feeding, based on his weight gain the previous 4 days. Oliver gained 2.5 pounds, but Dr.O wants to see more. It’s going to be challenging for Claudia to increase her pumping volume again, but she’s going to do the best she can do. If she doesn’t make enough immediately, she has the option of adding more formula than he’s currently getting. It wouldn’t be ideal, but when you look at the bigger picture, the great majority of his nutrition is still coming from breastmilk.

Oliver saw Dr. Rosenthal yesterday, the cardiologist from Lucille Packard. He was pleased with how Oliver looks. He told them Oliver looks “sleek”, like a seal, with fat underneath the skin. Kind of a funny way to put it, but he’s definitely right, Oliver is looking solid. His head does not look big anymore, and his torso has filled out finally. Dr. R performed an echocardiogram and it looked to Claudia and Tom like the function of Oliver’s ventricle had decreased slightly. Dr. R said some of his colleagues had studied the film and agreed with Claudia and Tom’s assessment. But, Dr. R did not. And he has spent lots and lots of time studying echocardiograms. In the end, they decided there was no change, which is very good news. He also encouraged Claudia and Tom to remember that the echocardiogram is only a small part of the picture, and reiterated that Oliver looks great. He listened to Oliver’s heart and noted that the murmur is still there, indicating some backflow from the ballooned valve. He says another catheterization (ballooning) is in Oliver’s future. Not right now though, and we don’t know when.

In a few days Oliver will have his first Pulmonary appointment, with Dr. Cornfield. Claudia has also been talking with the Occupation Therapist (Annette?). They’re going to do the suck/swallow test sometime soon. Claudia has been giving Oliver little tastes of breastmilk while she pumps, and she thinks he knows what is going on when she’s pumping. He used to gag on it, but I’m so happy that Claudia persisted everyday, and now he does not. Today, she saw a good moment to take it further. She had poured a little breastmilk into his mouth, just the leftover drops from the pumping shield. He seemed good with it, maybe there was some curiosity in his eyes. She put a nipple on the bottle and put it up to his mouth, very very cautiously. She said Nathan was reading Oliver a book and Oliver was fairly distracted by that. She slowly put more and more of the nipple into his mouth, until it was in all the way. He kept it in his mouth for about 5 minutes, she thinks, and he suckled some breastmilk out of it. She doesn’t know how much, but that’s not what’s important anyway. The good thing is that he may start to trust oral feeding again. Maybe from the bottle today, then from Claudia next. Oliver has already made the connection between the little bottles of breastmilk and feeling full in his tummy. It would be great if he could make the connection between mommy’s breasts and the full bottles. Dr. R told Claudia that for a baby that was as sick as Oliver has been, he would expect Oliver to be eating orally in about twice the amount of time that he was in the hospital. In other words, it may take him 8 additional months to begin feeding orally. This is useful to know, because it takes a huge load of pressure off of Claudia. She can do a little each day and not feel like it’s futile if he doesn’t start breastfeeding right away.

Once Oliver woke up from his nap, Cecilia and I became the two-headed monster we’ve always been to him. We stuck our faces close to him and talked to him and played with him and had lots of fun. Oliver looked my way and gave a big smile and I was actually able to restrain myself from screaming, for the first time! Cecilia bent over him and he looked interested, so she bent closer. That’s when he grabbed a fistful of her hair and pulled! It was quite funny. Mom says he’s probably been wanting to do that for so long! He gave Lizzy a big big smile, and recognized Ingrid too. She was so happy to see him. There was even a huge smile for Grandpa’s elephant painting. Claudia put Oliver in Ingrid’s lap briefly (she wasn’t really holding him but she thought she was); you can see from the pictures that Ingrid was thrilled. Oliver, on the other hand, not so much.

WARNING! If you are Claudia, do not read the next part!!!

Right before we left, when Claudia was not in the room, Cecilia tried something on Oliver that she’s in the process of making him for Christmas. The photo is adorable and I couldn’t resist posting it. Sorry Cecilia!

Oliver rolled over today, for the first time! Claudia was very excited for his big accomplishment, and she called to tell us the news. Ingrid and I visited him for a few hours today, but we weren’t sure how to coax him into it. Oh well, we’ll see it eventually.

Oliver is looking great. His skin especially looked beautiful today. He is at the tail end of his cold, but still on antibiotics. Nathan and Bella are sick too. He is looking chunkier in the leg department. Today, Claudia discontinued Oliver’s Methadone. His last dose was at 12am this morning. His regular dose would have been at 8pm and he was getting fussy but it’s so difficult to know if this was causing his discomfort. Tonight will be his last dose of Ativan I think, then he’ll be done. He may experience some withdrawal for a few days more. But Claudia has PRN doses available just in case.

Claudia went to a doctor’s appointment while Ingrid and I played with Oliver. We put him on a blanket on the floor and talked to him and moved different limbs around. We tucked his legs up and held his arms while we rolled him side to side gently. I’d seen Claudia do this with him (it’s one of his OT exercises), and his eyes showed me that he recognized this game. I tried pumping his legs and almost got a smile; his eyes were engaged but the impulse didn’t reach his mouth. We held out some colorful plastic rings for him, the kind that link together. He reached out and grabbed them and I was really surprised at how much more skilled he’s become with his grasp since I last saw him, only a few days ago! We read a few books to him and he studied each page carefully, in a very interested manner. But only a couple of pages at a time, then he’d return to the rings in his hands. He is still fascinated by my iPhone too. Even more so now that Ingrid stuck shiny gold and silver star stickers all over it. We fed him his new volume of 60mL, up from 50 I think. It may have been my imagination, but it seemed to me like he was more satisfied with the bigger volume. I say this because he seemed very relaxed afterward. I also saw him moving his lips and tongue around, almost as if he was remembering the taste of something. Claudia has been giving him little tastes here and there of breastmilk. I wonder if he is somehow associating feeling satisfied with that taste in his mouth.

The evening hours are generally fussy for Oliver, and today was no exception. Claudia and I took him for a walk and he settled down but when we came home he woke up and was uncomfortable again. He kept scratching the back of his head, which has now become a little red. We fed him and held him and rocked him for a long time and Claudia was able to get him down to sleep. She’s going to have the miniscule dose of Ativan ready at 4am, just in case. This is a scheduled dose but it is “as needed”.

Claudia has discovered a lovely way to help Oliver through the fussy hours – a warm bath. I’ve heard that Oliver giggles and wiggles around in the tub and just loves taking a bath with mommy! I hope to get some photos of Oliver at bathtub someday.

Claudia was telling me that there’s no longer any weird little behaviors leftover from Oliver’s hospital days. He wakes up happy. He turns his head freely. He moves all around and doesn’t seem as afraid or suspicious of people. It’s amazing how well he has adjusted to home life, after only 3 weeks.

Here are some photos from Ingrid and I’s visit today. Well actually I can’t find my plugger so I’ll have to add photos tomorrow.

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