Ingrid and I accompanied Claudia to Oliver’s OT appointment today. Claudia has decided to be proactive about Oliver’s feeding, because it’s very important to her and because none of her other doctors are taking charge in this area. She plans to meet with the OT staff at Stanford every two weeks.

Earlier this month, Oliver had an evaluation by the state. It was a 3 hour evaluation by three different specialists. They gathered their information from Claudia and Tom, from Dr. O, from hospital records, and from their own observations. It was a pretty thorough evaluation. There were several areas they looked at, such as gross motor skills, fine motor skills, social environment, etc. Oliver scored well in most areas. In fine motor skills for example, he was rated at a 7 month old level, so he was a little ahead. In gross motor skills, he was rated at a 5 month old level. His lowest score came in the eating category. I forget what they called this, but his deficiency was listed as 100%, because he is not eating orally at all.

Today we met a new (to us) OT at Stanford. Her name is Marianna and she seemed to be a good match for what Claudia needs. She gave Claudia lots of ideas, and tried a few of them while we were in the office. They fed Oliver little spoonfuls of rice cereal. She thought maybe since the rice cereal is bulkier that it might stay down better. He didn’t spit it up but Claudia thought the rice cereal experiment didn’t go that well. Then they gave Oliver a baby biscuit. He really seemed into this, and it held his attention for a few minutes. The baby biscuits are convenient because he can be in charge of when it goes into his mouth, since it’s easy for him to hold by himself. And he did put it into his mouth several times, and even gnawed on it. Marianna showed us a video of an older little girl whose mom was just letting her play with food. The girl would put the food into her mouth, chew it some, and then spit it back out. Then a new piece would go in. Marianna said this was really good, that the girl was getting comfortable with food in her mouth. Eventually, she did begin eating orally. Her point was that playing with food is the first step. Whatever way Claudia can entice Oliver to play is good. Marianna said that Oliver is very charming, and that we should try to encourage him to play with food as a social activity. Not what you usually want to teach your child, especially once they’re older, but we cannot compare Oliver’s case to a typical child. We have to be willing to put aside the usual rules and try different ideas. At the dinner table, Claudia can pass little bits of whatever they’re eating to Oliver, as long as it’s safe for babies. The goal is not for him to eat it, just explore it with his mouth. Eventually he will take that next step, maybe once his schedule is rearranged and he has some periods where he is hungry (right now he is only a little hungry right before meals). She said Oliver is not ready for that step yet though, until he is more comfortable with things going into his mouth. She wanted us to respect Oliver’s attention span, and realize that it is short. Once he is done with exploring a food, we should put it aside and try something new. I liked Marianna’s plan because she was very much about following Oliver’s cues. She said he is the boss right now when it comes to eating, and he will let us know what he’s ready for. She was also supportive of Claudia’s desire to work toward breastfeeding; the other OT there was not as encouraging. At the end of the appointment, we took a stroll down to the PICU to see some old friends. Everyone there gushed at how big Oliver looks, and he gave them all huge smiles.

Another exciting change for Oliver (and Claudia) is that he has begun sleeping in mommy and daddy’s bed. I should preface this by saying that they just started, so it may still be an experiment. At the hospital he was not able to do this and I think they all missed out. I imagine that he must have gotten used to sleeping in a crib, too. I wasn’t sure he’d like it, but they have slept together the past few nights and it’s going well. Claudia says Oliver presses against her the whole night, and leaves her little room of her own. But they’ve been sleeping deeply and waking up extra happy every morning. I looked up cosleeping on wikipedia and they site several studies that show important benefits to mother and baby. Moms sleep better, so that’s nice. But there could be some really good benefits to Oliver too. Babies that cosleep reportedly grow better, because the stress hormone cortisol is lower when the baby is sleeping next to mommy (cortisol interferes with growth). Babies who cosleep breathe in rhythm with their mom, and this may explain why the SIDS rate is lower in cosleepers. Their heart rate is also steadier. There were a couple of studies that concluded that cosleeping improves heart growth specifically. They also mentioned increased self-esteem and independence for children and adults who coslept when they were babies. We have a family bed so I know from experience that it’s not for everyone. But I love the thought of Claudia and Oliver snuggled up together and for me, it is one of my favorite memories of being a mom. It’s wonderful waking up next to your baby, and being able to kiss them while they’re sleeping. There is something so angelic about a sleeping baby.

I hung out with Oliver afterward too, for a few hours. I noticed that he is more confident about putting things into his mouth. Although, Claudia says he’ll deliberately avoid the ones he knows are food, little smarty. Claudia has noticed that he is wanting to stay in the sitting position more. When you try to lay him down, he tenses his tummy muscles and pushes back. It would be great if he was indeed working on sitting up, since it’s one of the areas in which he was a little behind. His skin has cleared up nicely, finally. Claudia’s little strips of tape seem to be working well. She did ask Marianna about the G-tube (is installed surgically and goes directly to his stomach through his belly) and Marianna said that when she led a group for parents of children that don’t eat yet, the parents who had them for their children were for the most part happy that they did it. She said aside from not having the stuff on his face, there would also be the benefit of not having the social stigma, not looking different when he walks into a room. Claudia has been going out with Oliver more this week since mom is in Peru, and she has been stared at everywhere. She doesn’t mind the kids much; they walk over and stand very close to Oliver and just stare until she tells them about him. The adults though are more invasive with their pointed and sometimes insensitive questions. I doubt Claudia enjoys telling the story of Oliver to strangers several times a day.

I stayed with Oliver while Claudia and Ingrid went to pick up Bella. He was supposed to be sleeping but he just couldn’t do it knowing that mommy wasn’t there. So instead we played music on his little baby Mickey. Then I read him some books. His favorite one seemed to be a book with big photos of various animals. I made the noises for him and he thought that was pretty funny. But he was even more fascinated by the mechanics of the book. He took each one into his hands for several minutes and studied how it was bound, and how the pages turn. He put one in his mouth then didn’t do it again. He spent a lot of time looking at Ingrid today, too, in very loving ways. That OT was right, Oliver is a charmer!

A few days ago we returned from our family vacation to Lake Tahoe. See Andrew’s video below. Oliver’s only in it for a few moments, but I promise you it is worth watching for those first moments alone. Oliver had a wonderful time I think, unless he’s just always that happy? I don’t know, I told myself that it was because he had all his aunties around all the time. The altitude made him sleepier, even though he was on an increased amount of oxygen, and at all times. He also spit up more than usual. I noticed I didn’t have as much of an appetite either. The kids had an awesome time and it was well worth the extra six hours (!!!) on the drive home. There are lots of photos from the trip but I’ll have to post those another time.

A new video for all of us to enjoy.

It’s still one of Oliver’s favorite toys.

There’s nothing like the taste of mommy’s milk…

i don’t know what the story is behind this, but Claudia sent it to me and i thought it was cute.

Ingrid and I drove to Oliver’s this afternoon to help out. It turned out to be one of those easy days though, so all we really did was enjoy being with the Yores. 

Claudia went to get her pump and she put Oliver on his tummy for a few minutes, but he wasn’t into it. I tried to talk him into rolling over but he wasn’t in the mood for that either. Then I turned him over and he was super happy. I danced his arms to a rhythm and he smiled a bunch, even giggled every so often. I got my face down really close to his and he reached out to pinch my skin. Claudia began pumping and I set up Oliver’s bouncy seat. She gave him some little tastes of just-pumped milk and his little legs went crazy. His arms reached out to her and he got a crazed look in his eyes. He kept smacking his lips and it was obvious that he wanted more more more! 

A few minutes after feeding, Oliver spit up a bunch of his milk. We don’t know for sure why it happened, since it hasn’t happened in a few days, and doesn’t really happen much anymore. We think maybe he was in a slumped sitting position too long after eating. Anyway, the surprised look on Claudia’s face scared Oliver and we took him upstairs for a bath, to help settle him and clean them both up. At first, Oliver acted like it was his first time in a bath. He looked concerned and kept looking at Claudia and I for reassurance. Claudia kept him on her tummy while she laid down, so he was pretty much out of the water but still wet. She wet a little towel and draped it on his chest to keep him warm. He settled into the tub and seemed content there with mommy. I left to clean up our lunch mess and change over the laundry. When I came back, Oliver was in the water up to his armpits and looking down at it like it was absolutely amazing. He couldn’t take his eyes off it! He wiggled his legs around and kept watching to see what would happen under the water. I took him out and Claudia got the heavenly privilege of taking a hot shower and washing her hair. I laid Oliver on some towels on the counter and he was happy as a clam. That bath did wonders for him. And the big meal before the bath. Soon after he fell asleep.

I can’t believe how great Oliver looked today. He just looks so much bigger. And his eyes were sparkly and huge. He’s got a new coat of super soft, fine hair on his head now. The longer hairs have mostly fallen out. His face is healing up nicely too. Claudia is only using tiny little strips of tape to secure his NG. Maybe that’s the reason Oliver keeps pulling out the NG. But now Claudia knows how to reinsert it so maybe she’s willing to take that chance. And maybe with less to aggravate his face, he won’t feel the need to try to tear it off his face. I hope so. It’s great to see more of his little face.

Dr. O has increased Oliver’s milk volume again. He says that since Oliver is so active now, he needs 120 kcal just to maintain. They want him to gain of course, so he’s now getting 125 kcal. It may take a few days for Claudia’s supply to adjust, but I think she’ll be just fine. She came pretty close to meeting the total today. There’s more good news today, too – Dr. O told Claudia that she can discontinue Oliver’s iron drops!

So, I took a few videos of Oliver and I’m very excited about sharing them with you. But first I have to figure out how to do that. Thankfully Andrew is here to help me so it shouldn’t be long. Here are some photos in the meantime.

***

OK. Here it is! Yay!

The first thing Claudia told me is that Oliver pulled out his NG tube again this morning. Hmmm, maybe he’s trying to tell us something. Fortunately, they had a doctor’s appointment today anyway, so Claudia gave him a few hours break with nothing on his face. Then, she put in a new NG on the other side. Yes, she did it all by herself, at the hospital. She says she feels really good that she did it herself.

Oliver weighs 12 pounds 15 ounces today. There’s -no- change in his echocardiogram since the last one. Hooray!!!!!! This is exactly what we wanted to hear. His next visit with Dr. Rosenthal will be in mid-March. Things are going very well, and so there’s no need to meet in February.

Dr. R agrees that Oliver’s oxygen will probably be discontinued when he sees Dr. Cornfield, because he is doing very well. About the diuretics, Dr. R wants to keep Aldactone (AKA Spironolactone), because there are some good long-term benefits to continuing for someone like Oliver. He is going to talk with Dr. C and they’ll make a joint decision. Now for the best news of the day: Dr. R does not foresee Oliver needing any procedures for at least 3 months!!!

Tom asked Dr. R about Oliver’s ballooned valve. He said it’s not out of the question that Oliver’s valve could grow along with the rest of his body. Not even Dr. R can predict what will happen. Most likely though, it will not last him his lifetime. Hearing that there is hope for Oliver to never have another heart procedure makes me incredibly happy, even if it’s just a slim chance. 

As I’ve been reporting, Oliver’s little face has been getting pretty beat up from the adhesive used to hold the NG in place. Unfortunately, the damage has been getting worse. Now he has open, weeping sores. Dr. R told Claudia and Tom that there is a higher risk for infection with sores like those. It’s likely that Oliver will be fed via a tube for a long time. Even if he began oral feeding today, he would still probably need to be supplemented to meet the caloric demands of his body. It’s really really difficult (impossible?) to make a baby eat what they don’t want to eat, and it is critical that he receives enough calories. Another option that Dr. R brought up is the G-tube. A G-tube is put in place surgically and that is the main hesitation that Claudia and Tom have. Instead of going in through the nose, it goes in through the belly button. It is shorter and can be hidden/tucked away more easily, I imagine. Dr. R says it is important to let Oliver have his face free, so he can learn about his face and feel more comfortable making the transition to eating orally. I have to agree with this. Oliver is super annoyed with all the stuff on his face. But surgery is a difficult decision and I know Claudia and Tom will think about it carefully. Dr. R says that Oliver may qualify for a non-surgical option, using catheters and going in through the nose to insert the G-tube. 

Oliver has an appointment with the Occupational Therapist on the 21st. Claudia says that he is really really enjoying the taste of milk, and that he even gets mad with her when she doesn’t give it to him. It’s becoming a regular ritual when he’s feeding. I like to picture Claudia feeding Oliver milk from her pinky. It reminds me of the cute little games you play when you’re nursing. She’s working hard to provide that special nourishment for him, pumping away 5 hours a day. She deserves to be the one to give it to him, and see his little legs kick in excitement when he tastes it.

I saw it with my own two eyes this time: Oliver rolled over from his tummy to his back! He has done this before, 6 times on the same day. But then he stopped altogether. Now he has begun doing it again, and has been doing it daily. They say from tummy to back is the more difficult way, so he has learned the harder part first. Good for you, Oliver!

Oliver’s feeding program has changed again. Dr. O is normalizing Oliver’s feeds more, so instead of feeding him every two hours, they’re going to feed him every 3 hours. The total daily volume will remain the same, I believe. He also hopes to give Claudia a little more time between pumping sessions. They are doing it gradually, and yesterday he went 2.5 hours between meals and did just fine. 

On Sunday, Oliver’s NG tube got clogged. Claudia didn’t think Dr. O was in the office, so they took him to Stanford emergency. It ended up being a many hours ordeal of course, and Oliver missed two meals. The doctors wanted to x-ray him afterward to check placement of the tube. Claudia refused, because she has gone through this experience so many times, and knows that the likelihood of the tube being in the wrong place is very very slim, and she doesn’t want more x-rays going into his little body. Also placement of the tube can be verified with a stethoscope when one is properly trained. The doctor had her sign a waiver of liability, but in the end he admitted that the risk was indeed very small. Anyway, Claudia and Tom walked away feeling that they are ready to change his NG themselves. They’ve ordered their extra NG tubes and stethoscope already.

Oliver was kicking like crazy when I saw him yesterday. I mean, really kicking!!! He is SO strong now. I had him in my arms and he was unhappy about something, and he did that stiff baby thing, and I was shocked at how hard his little body is! He is kicking up a storm when he’s excited. Claudia says he’s also begun doing it when he wants to get your attention. I thought that was pretty smart of him. 

Oliver had an evaluation by the state a couple of days ago. It was a 3 hour evaluation. Some people came to the house and watched Oliver do everything he does. They said in a lot of areas, he is behaving at about a 5-month old level. In other areas, such as eating, he is of course not performing up to his age level. All of this is normal and expected for a baby with Oliver’s history. They also said that Oliver is doing *remarkably* well for a baby who was only been home two months, in terms of what he has already achieved. Oliver was approved for in-home assistance, once a week. Someone is going to come and spend an hour with Claudia, teaching her and Oliver some basics, like training him to sit up eventually. They said he will probably sit up when he’s about a year old. They have set out goals for him. They also said Oliver may have speech delays because he has not been feeding orally. But this is just a maybe. They observed that Oliver is persistent and careful.

Some great news: Oliver was tested Monday for hematocrit. His number was 38! When he left the hospital, the number was in the 20s, and the doctors wanted Claudia to give him Epogen shots daily. She said no and she was right. His number indicates that his red blood cells are carrying a good amount of oxygen (or something like that). Yay Oliver!

I may have some photos to post, once Claudia emails them to me. Check back later today or tomorrow.

***

Oliver has an appointment with Dr. Rosenthal (cardiologist) tomorrow. He’s going to have an echocardiogram and an EKG (or was it EEG?). Claudia’s going to ask about the Lasix and Spironolactone (diuretics). Dr. O says because neither Dr. R nor Dr. C has increased the diuretics, along with Oliver’s growth, that this indicates to him that it may not be that necessary. Oliver doesn’t see Dr. C until mid-February, but she’s eager to get that special oxygen monitor to perform the challenge. She’s already cut back on the inhalers (OK’d by Dr. C last time) and she wants him to know that there’s been no change. She told me that she feels like the meds and oxygen are going to go away soon! How exciting!!!

Here’s a couple of photos I took yesterday. We had put Oliver in bed to sleep but as soon as we set him down he began playing. You could see it all over his little face that he was so proud, that he could kick by himself now! Whenever he wants to! Very fast! I got a lovely little recorder for Christmas and I can’t wait to capture some of this on video. Watch out, Oliver, I’m coming to get you!

I’ve been seeing Oliver here and there but have been lazy about taking photos. I’ll tell you what is going on though.

Oliver had a few days when he lost some weight. Remember how he was spitting up? Well Claudia cut out the formula that she adds to her breastmilk every feed, and he didn’t spit up at all during those days. The formula is for bulking up the total calories. She did still add it to his nighttime feed, but cut it out of his daytime feeds completely. At his last weighing he showed a loss of 6 ounces. That’s a lot, and doctor O doesn’t quite believe he could have lost that much in only 4 days. They’re assuming the weighings were not totally accurate. Dr. O is glad that Claudia found a way to help Oliver. Spitting up is not only scary for him and upsetting for Claudia, it wastes precious breastmilk/calories that he needs. Oliver’s body uses more calories than most, because his heart has to work harder to cover the basics. If he doesn’t receive a large amount of calories, then he easily loses weight in just his normal functions. To make sure he continues growing, Dr. O increased his total calories again. The nighttime calories will remain the same (with formula), but the daytime feeds will increase from 60ml each to 90ml each of pure breastmilk. I know it sounds like a huge jump but they are increasing it gradually. According to Dr. O, Lucille Packard was starving him. And now he needs to catch up. They can’t just push a lot of fluids on him though, because there’s a possibility that he could start accumulating fluid in his lungs again. This could lead to heart failure. It doesn’t mean his heart would stop working. Heart failure occurs gradually in children. It was scary for Claudia to hear, but Dr. O reassured her that she would see the signs if it was beginning to happen. Persistent heavy breathing, high heart rate, enlarged kidneys (that a doctor could feel), less wet diapers, paler than usual skin, cough and congestion, lethargic behavior, poor weight gain, puffiness in hands and feet and around the eyes, irritability and clamminess. Dr. O checked his lungs today, and they are in great shape. Not congested at all. Plus we got a glimpse of Oliver’s heart rate today when she measured his oxygen, and it was excellent, in the 120s, so much lower than when he was in the hospital. 

Oliver drank a little bit of milk from the bottle! This is of course good news, because he is making progress in overcoming his fear of swallowing. It’s not certain if he did this because the milk no longer contained formula, and therefore tasted better, or if he was just ready to give it another try. What happened is that Claudia forgot to put away a bottle of milk that she pumped, and the cream rose to the top. This is what she let him taste, and he went crazy! I’m not sure if it happened at the same moment, but she gave him a bottle and he sucked a little bit of milk out of it. We tried again today, but he wasn’t it to it at all. I guess it’s one step forward, two steps back.

I asked Claudia how Oliver has been tolerating the increased volume. He was up to 75ml that day. She said that in the afternoon after one of the 75ml feeds, he seemed satisfied and calm. She got the feeling that the larger volume made him happy.

Oliver’s face has been getting more and more irritated by the bandage that holds his NG tube. It is critical to have the NG taped, because it’s a big deal if he pulls it out (which he can do in about 2 seconds). It means another trip to the doctor and possibly a missed meal. There’s really no way around it, and his little cheeks get raw and painful every few days. It’s traumatic changing out the old tape and putting on the new. Claudia says it’s the most difficult thing of all.

Claudia has cut out one of the daytime inhaler treatments. So far she has not noticed a significant difference. Oliver is still taking diuretics, at the same dosage as when he left the hospital. Dr. Rosenthal says it’s OK with him if Dr. Cornfield wants to change that; Dr. Cornfield says everything’s going well so why change anything. Dr. O says somebody needs to take ownership for the diuretics and Claudia is wondering if he still needs that and if so how much is necessary now. It’s exciting to see his drugs going away. Speaking of which, Oliver’s February appointment with Cornfield may result in no more oxygen/cannula. Claudia is going to do a 24 hour challenge without oxygen. She only uses it now during feedings. Today we hooked up the oxygen meter and he sat’d at 94-100% while feeding, without oxygen. He was moving around playing, too. I think this is a good sign. The challenge can’t happen though until a new oxygen machine comes in, one that will record the readings continuously, and provide a 24 hour picture of how Oliver is sat’ing. This is what Dr. C wants to see.

Oliver has been approved to take a little trip to the snow. He needs to bump up his oxygen to compensate for the decreased oxygen at higher altitudes. But other than that, he is set to go, if they decide to do it.

Yes it’s true. Our little miracle peanut is 6 months old today!

To celebrate his birthday, Oliver pulled out his NG tube. The adhesive pad that holds it in place irritates his skin and so I’m not surprised that he decided to just pull the whole thing out. Claudia took him to the doctor’s office and they put in a new one, in the right side, to give his little left cheek a break. While they were there, they took the opportunity to weigh him. I am happy to report that Oliver is once again reaching his goal of about an ounce a day. He weighs 13 pounds 2 ounces!

Before Claudia took him in, she let him have some time without the cannula. I guess she wanted Oliver to live it up a little today. She said Oliver really enjoyed his naked face time, and that they’re having a wonderful day overall.