Oliver is looking more and more proportioned. His cheeks don’t look chubby anymore, he just looks uniformly rounded, and bigger. It looks like his little body is catching up with his head. He is back to gaining weight again. He looks more and more solid, not like a wiggly young baby anymore.

Claudia says he had a restless night, because he’s at very very low doses of Methadone and Ativan now. The tail end of weaning is usually the most difficult. During the night, she gave him his Ativan dose early. She thought she’d have to modify the whole next days’ schedule, but he did OK with the regular schedule that day. In just a couple of days, he’ll discontinue Methadone, then a couple of days later, Ativan. Claudia is seeing the signs of withdrawal, but she says he is OK as long as he’s distracted. Only a few more days and you’re done, Oliver. We’re all so proud of you!

Oliver was with us for almost the entire party. He was a little fussy at first, but then we fed him and gave him his Ativan. He fell asleep for a few hours while Claudia wore him in the sling. Once we took care of his meds and food, Claudia was able to walk around and socialize and have fun at her own party, with her cute little bundle asleep on her belly. At dinnertime, he woke up and I carried him around to visit with family while Claudia ate a quick bite. I couldn’t see his face, but everyone says his eyes were open really wide, and he enjoyed seeing our familiar faces. Grandma Yore and Maureen got a few smiles out of him. He was especially fascinated by the candle at each table.

Soon it was bedtime for Oliver and we laid out all the meds for the night. Claudia said once the two drugs are done, she’ll be able to rearrange the inhalers so that she can have an 8 hour stretch with no meds nor feeds (the nighttime feed is continuous). She may still have to get up to pump, though. Especially now that the GI doctors upped the volume of Oliver’s feeds, Claudia needs to produce more milk. Once she proned him, Oliver fell asleep quickly for the night.

I don’t have any photos yet, but will post them as they come.

***
Mom says Oliver went to the doctor’s today because Claudia noticed him pulling at his ears. Sure enough, he has an ear infection. It’s important for Claudia and Tom to treat these infections early. Critical, actually. Now that we know this, we can look back and see that there were small signs of it, like the mucus in his poop and the congestion. Claudia has told me before that it’s good to have a second set of eyes, and I try to do this for her but it’s easy to cross the line and become annoying, as I have surely done a few times. He’s going back to the doctor’s tomorrow for a check up.

The doctor reminded them how important it is for everyone to wash their hands when they come in the house, and again if they plan to touch Oliver. I know there are lots of visitors and Claudia and Tom probably won’t be able to remind every person every time, so I’m putting out this request on Oliver’s behalf. Most importantly, if you or someone you’ve been in contact with recently is sick or has been sick, please don’t visit until you are sure you’re completely healthy. He will undoubtedly still catch a bug sometimes, but at least we’ll have done what we can to prevent it.

Thanks for the photos, mom!

We went over for a little visit today, so I thought I’d write a post. Oliver was looking adorable as usual. He’s getting down low on his Methadone and Ativan, and seems to be doing just fine, much better than when he was weaning last time. In a little over a week, he’ll be down to just a handful of medicines. The Methadone and Ativan will be done, and he’ll have just the two inhalers, two diuretics, and iron drops. I think that’s all. I could be wrong, but I think there was a point where Oliver was on 22 different medicines! I know the Methadone and Ativan were given every 4 hours, so I’m hoping this means Claudia will get to skip one of those nighttime wakings, maybe the 4am one? We’ll see I guess.

Oliver had an appointment with the GI (gastrointestinal) doctors yesterday. They were pleased with his weight gain overall, but Claudia told them that Oliver has lost 2 ounces in the past couple of days. They made some new calculations and gave the go ahead to increase Oliver’s feed volume, from 530mL/day to 600 mL/day. Dr. Rosenthal says Oliver is not so fluid-sensitive anymore (not sure how he knows this). He does seem ready and willing to eat more, to me. These kinds of adjustments will have to be made continuously, until he is nursing again.

While Grandma, Tana and I were there, Claudia took the opportunity to do a little shopping for Thursday. Oliver slept on my chest for the entire time she was gone, about an hour and a half in all. When she returned Oliver woke up and relaxed on his boppy while Grandpa made a beautiful drawing for his room. See the photo below, which I’m sure you’ll immediately recognize. When he heard me talking, he craned his head to see me. I like that he recognized me, and that he is feeling more free to move his head around, since his head movement was mostly restricted while in the hospital. He gave Cecilia and I some cute little smiles and seemed amused to have us there. Unfortunately, every time he smiled at us we screamed in happiness, and then the look on his face changed immediately to confusion/fear. When mommy came into the picture, his smiles were huge, and he looked absolutely tickled, even kicking his little legs in excitement. He would not take his eyes off her face. She asked us if we wanted to see him really giggle, and then pumped his legs quickly. He did indeed giggle and we heard some little laughing. The look on his face was pure delight!

Oliver is looking great! His little face and body are heftier, and his voice is stronger. He weighs 11 pounds! He’s almost done with weaning from Ativan and Methadone. We’re not seeing the signs of withdrawal and he’s at the tail end of it, which was the most difficult part last time. His last dose will be December 1st, and starting December 2nd, he’s on “PRN” (as needed).

Oliver, Claudia, Bella, Nathan, Grandma, Grandpa, and Al came for a visit this afternoon. It was soooo great to see Oliver! I was missing him but I didn’t realized how much until I held him. I gave Claudia my beloved sling, which saved my sanity when Ingrid had colic. He snuggled right into it and soon fell asleep. We went for a walk on Cecilia’s street, which turned into a parade as more and more people joined us. Some of Oliver’s adoring fans finally got to meet him in person!

Oliver was wearing a super cute little football player onesie, with matching socks. When we got back from walking, he woke up and was really really hungry. He settled down once his tummy was full, and Claudia laid him down on the couch to play. Oliver gave us one smile after another! I wiggled my fingers for him and he began waving his hand. I was happy to see that he remembered our little game. Soon it was time to get going. We settled him into his carseat and he was immediately mesmerized by his hanging elephant. Grandma was on Oliver duty in the backseat. I hope they had a relaxing ride home.

Here are some kind of blurry photos. Sorry about that. Check back after Thanksgiving, that’s when I’ll have another update and photos.

Tana says that Oliver is spending his first weekend home, at home. They’ll probably venture out for some walks since the weather is so great. Today Tom’s brother Dan and his wife JoAnn and the kids are over and they’re helping Tom build a gazebo trellis type thing. JoAnn mowed the entire back lawn! Tana is spending most of the day with Oliver (I am so jealous!). She said he is smiling like crazy. There are so many new and fascinating things for Oliver to see, just at home. He’s getting to spend time in different rooms and is having a happy day.

I just got back from a visit with Oliver. I say visit, because sadly, Claudia does not really need me there anymore. She pretty much has things figured out, and very organized, and is adjusting well to her new sleep hours. I asked her if she’s tired and she said no, that she actually feels very energized. I guess that’s what happiness will do for you!

Oliver looks fantastic!!! He has grown 3 ounces since Tuesday! His new weight is 10 pounds 13 ounces. Oliver had his first outpatient Pediatrician check up today. Claudia was able to find a new Pediatrician, Dr. O, with an office close to their home. She and Tom loved him. It’s a family business, with his wife at the front desk. He is more than competent, and has a Cardiology background. He is good at getting patients off NG tubes. He even knows some of the staff at Lucille Packard. He understands all the interventions that Oliver has had. His wife said he drops everything for his Cardiology patients. Also that he is on call, 24 hours a day for Oliver. The old Pediatrician called today, saying that she did want to have Oliver as a patient. Too late! Claudia is very happy with her new one.

Dr.O said Oliver’s weight gain is excellent; he wants to see a pound and a half per month. His head is in the 25th percentile, which is good because at least he is on the standard growth curve. He said Oliver’s body is about the size of a two-month old, and is not on the growth curve. It’s the same thing I keep telling Oliver: we need to fatten you up! Thanksgiving’s coming! I see good weight gain coming for Oliver, because he’s not having all those interventions everyday anymore, and interruptions in feeding. The doctor also said that Oliver’s chubby cheeks are from the steroid inhaler he’s taking.

Dr.O also said that Oliver’s lungs sound completely clear, and he has no doubt that his lungs are both inflated. That if he didn’t know Oliver’s history, he would not be able to distinguish him from a typical baby. And that Oliver is doing perfectly well without the lobe they removed. Hooray!!!

Oliver is SO happy at home! You should see these pictures I took. I actually stopped taking them, because he’d already given so many smiles! One of these smiles was the biggest I’ve ever seen him make; it showed all his little upcoming teeth! I don’t remember if this is the age when this happens, but it seems to me that Oliver has shifted from loving everybody equally, to preferring mommy. If mommy is in the room, the rest of us are just not as satisfactory. Why have margarine when you can have butter? Of course he always knew she was his special one, but we used to be able to steal his attention away more easily. That reminds me, I heard Claudia calling Oliver “Peanut Butter” today!

Oliver is progressing well on his weaning schedule, and I think his happiness at home has a lot to do with it. He is down to 0.4mg of Methadone, and about the same of Ativan. Claudia received a new weaning schedule from Dr. Good today. Oliver’s weaning will be complete by December 2 if all goes according to plan. I love that we have seen no signs of withdrawal since Oliver has come home. I haven’t seen one single episode of rage. Just normal vocalization over normal baby things, like being hungry. By the way, his voice is getting stronger again!

They did receive a new oxygen machine. It’s just a big tank that is capable of delivering 0.25 mL/hour. So Oliver is back on his regular rate of oxygen. Dr.O told Claudia that he can see why Dr.C sent him home on this low-dose of oxygen. He said babies don’t grow as well if they don’t get all the oxygen they need. Even just temporary dips, although not really dangerous to Oliver since he is doing all his own breathing, can cause small setbacks in growth. Better to ensure he has a good supply at all times. I’m sure Dr.C will re-evaluate when he sees him in mid-December. Anyway, this new tank makes absolutely NO noise. This is wonderful, but it makes it easier to forget to turn it on. They’re still waiting for the humidifier.

I’m afraid Cecilia’s right, I really do have to stop blogging so much and start packing (we’re moving this week). So there’ll be no updates for a few days. Here are some photos of Peanut Butter from today, enjoying life at home. And looking spiffy in all the beautiful clothes that one of Claudia’s friends handed down to him.

Oliver had a good day, a little fussy at times. Claudia modified his feeds to begin making some room for nursing, and he was hungry. She still gave him the same total volume at the end of the day, but the daytime feed volumes were smaller and the nighttime bigger. She pulled a lot of air out of his tummy (via the NG tube), so we think maybe the nighttime volume was too much for him. She talked to someone at LCPH and they recommended going slower. I wish they had given her a sample schedule to follow, but basically they just left it up to her discretion. Lesson learned! I guess that’s the only way we’re going to figure it all out.

Claudia is doing great. She has already organized and re-organized a bunch of things in only the second day. She is not too bummed about the loss of continuous sleep, either. She told me she is just happy! A homecare nurse came by last night and gave them some tips and a scale. She also fixed the monitor so it doesn’t alarm everytime Oliver sats 100 (which is actually a good thing). Oliver weighs “10 10″. I’m not sure if that means 10 pounds 10 ounces or 10.10 pounds. It doesn’t make sense when you remember the numbers from the hospital, so we should probably just toss those out. Their method was pretty unreliable. It’s easier now, because Oliver doesn’t have as many things attached.

Oliver slept a lot again last night, and was sleepier today, like yesterday. Tomorrow some replacement equipment is supposed to come, a new oxygen machine (hopefully quieter and able to go down to 0.25) and some other portable tanks I think. They’re supposed to bring a humidifier for the oxygen, which Oliver needs. The current machine doesn’t have one and it’s drying him out and making him congested in the mornings.

Oliver’s operation site was hurting today with CPT. Claudia had to skip that area. So there’s still some soreness there. The rest of his body looked a little chunkier though, and that was nice to see. Cecilia and Lizzy came to help and that made a big difference. I feel like our kids are getting ignored while we get used to having Oliver at home.

Even though Claudia’s efficiency improved, today was more hectic. She had a million phone calls to make regarding appointments. She had to find a new pediatrician, as soon as possible. She had questions for doctors. There was a mistake on the drug weaning sheet they gave us the last day; it had Oliver decreasing in both Ativan and Methadone tomorrow- yikes!!! I am SO glad that Claudia caught that! Someone called to say that Oliver had left the hospital without a hearing test, which is mandated by law; yet another appointment was made. Claudia called about tomorrow’s appointment, the barium swallow appointment with Radiology, because they wanted to “see” Oliver’s swallow, but Oliver is not nursing or feeding from a bottle yet, so it makes no sense to starve him all morning and then make him do something he’s not ready to do yet. They agreed to reschedule that one. In the evening one of Claudia’s friends came by to visit and drop off dinner, right when Oliver was feeling hungry and mommy was stuck on an important phone call. Daddy was home and trying to be a good host and answer questions but it takes two people to do most of the work that Oliver needs, like setting up his feed. Oliver could feel the stress and that didn’t help him feel better. Claudia finished her phone call and picked up Oliver. Of course he felt immediately better. I set them up on her rocking chair that Tana gave her and they rocked until Oliver fell asleep.

photos coming….

I’m back home now after spending last night at the Yores’. It’s been more than a day since Oliver was discharged, but I still can’t shake that surreal feeling.

I got to the hospital early because I didn’t want to miss the big event. But, the big event didn’t actually happen until about 2pm. In the meantime, there were lots of small details to cover. Signatures, reports, CPR training, packing, appointments, medications, questions, and of course, taking care of Oliver. I felt nervous and anxious. Oliver was happy, and we propped him up to play with his mobile longer than usual while we got everything done. Fortunately, he didn’t pick up on our nervous energy.

The actual discharge papers came with the same nurse who’d been popping in all morning. She seemed to be the one in charge of releasing Oliver. I don’t know what I expected, some big ceremony I suppose, but it was actually very anticlimatic, and not how I’d dreamed it would be. A few people filtered in to say goodbye, but most people were totally unaware that we were leaving. It felt strange that something so huge to us, was just another day for everyone else at the hospital. I was disappointed not to see Dr. Perry, because we’d been told that he would be the attending doctor that day (not true, he wasn’t on duty). It’s probably for the best, because I might have sobbed in front of him. Really, there are no words to express how grateful I feel to him for saving Oliver’s life.

So the nurse came in very nonchalantly and said here are Oliver’s discharge papers. And here’s this, and here’s that, and let’s go over this one…blah blah blah…and Claudia nodded and asked questions in the appropriate manner. But once I saw that green discharge sheet with Oliver’s name on it, I nearly lost it. She left a few minutes later and I went into the bathroom and cried my heart out. When I came out Claudia and I talked about the moment and hugged and I wished that our mom was there, because she would understand completely. And she deserved to enjoy this moment with us.

After this, it felt awful and strange to be at the hospital. No one was taking care of Oliver anymore, and actually personnel kept walking by casually to check if we’d left yet. Tom was held up at work and he and Grandpa came a couple of hours later. Tom seemed very nervous, probably worried that someone would come in and change their minds suddenly or want to run one last test. I think we all felt that way!

Claudia turned off Oliver’s monitor (gasp!) and went to pick up his meds while I took off his leads (the wires that monitor his heart rate, respiration, and pulse). We had already removed the blood pressure cuff. Oliver was free to move around his crib as he’s never been before. I snapped a couple of pictures of him playing with the bars. He’d probably always wanted to touch them! I also took him over the curtains, which he’d always stared at so intently, so he could finally touch them. When I lifted him up, the hospital ID tag on his ankle slipped off and fell to the ground (you never pick up anything that has fallen on the hospital floor). It was funny because we’d always joked how Oliver might just get up and walk away if it wasn’t for that important ID tag! The timing was perfect. We let him play with his mobile one last time while we all said our private goodbyes to this place. He was so happy that it was hard to make the move. Claudia’s adorable photo from yesterday was taken at this point.

We got ourselves a red cart like the ones we’d always see other people leaving the hospital with. Then, we were off! Claudia carried Oliver, of course, and we all followed her and Tom. Claudia told a few people that looked our way, that we were going home. I thought maybe she knew them and I just didn’t, but then I figured out that she was just saying it to whoever looked at us. We got in the elevator and went down to the PICU, where Oliver had spent most of his time (life). Claudia and Tom went in and said goodbye to some people. Same for the NICU; unfortunately nurse Chris was on her lunch break. It felt strange leaving without saying goodbye to these wonderful people we’ve come to know. Down at the lobby we waited while Tom went to install the carseat and bring the car around. I took a couple of pictures of Oliver here. He was very tired but I think he knew the big secret because he was trying hard to stay awake. He knew something had changed. His eyes were big and he was looking around, but in a calm way. He was in mommy’s arms and so he wasn’t afraid.

Ingrid and I were last to arrive at the house. My dad had put up a big banner saying, Welcome Home Little Oliver! We took one photo outside and then once inside we all got busy doing a million little things that were all extemely important. Tom set up the equipment, Claudia took Oliver to his room, I began putting away all the myriad of devices and parts that Oliver’s care requires: nebulizer spouts, tubing, nursing bottles, nipples, shields, syringes, feed bags, medicines, etc. Cecilia typed a spreadsheet to help Claudia know which medicines are due when. Tana and my dad held Oliver while Claudia went to pump. I made a phone call to the hospital to ask a question. There was so much to do!

After a couple of hours, Tom brought out a bottle of champagne. We toasted to Oliver, and to not having to be at the hospital right now!

Claudia and I gave Oliver his meds together to double check we were doing it right. It was nerve wracking! So many numbers to keep track of, and little bottles of medicine, and the exact times to administer them. It is a constant stream of work to administer the drugs, give nebulizer and CP treatments, mix up his food and give it to him every two hours. Claudia also has to pump every other two hours. I know Claudia will do a good job but I don’t know how she’ll ever get a moment of rest! Claudia gave all his meds during the day, Tom did his nebulizer in the evening, and stayed up until 11pm to wake up Claudia, who had gone to bed at 9pm. She then pumped and stayed up to give Oliver his midnight medicines. She then set the alarm for 4am and set out her 4am meds. At 4am she gave Oliver his meds. At 6 or 7am, Tom got up for the day and was in charge of Oliver and Bella. Claudia was supposed to sleep in but she woke up at 8am to give him his early day meds (the morning meds total 6). I’m happy to report that Oliver had a wonderful first night of sleep at home! He slept 12 hours!!!

When Oliver woke up, Tom helped me disconnect his oxygen and set it up downstairs. He was still fussing from waking up and I was holding him over my shoulder. I set him on my lap facing me and there was a pause while his brain processed…then he smiled, a big smile for me! I thought I saw relief in his eyes too. How wonderful to be greeted by one of his adorers first thing in the morning! I held Oliver while he stared out the window. He was entranced by the backyard. Bella and Ingrid were having a tea party in the same room so there was plenty of interesting things to see. He did get fussy again after a while, and that’s when mommy came down the stairs and made everything all better.

Late in the morning, we managed to carve out some time to go for a walk. Claudia’s friend Jeannie had given her this lovely little Moby wrap. We tucked Oliver in snug and comfy and went around the block with Grandpa and the kids, oxygen tank in tow. It was heavenly! Oliver immediately fell asleep and stayed that way until we took him out. We stopped at Karen’s house to show off our little peanut but no one wa home. Claudia and Oliver enjoyed their walk immensely and I have a feeling they’ll be doing this often.

The rest of the afternoon was hectic but more because of the kids than Oliver. Grandma Yore and Cecilia came for a visit and Claudia got busy returning important phone calls, pumping, and setting up Oliver’s 4pm meds. She got in a short nap with Oliver, alone on Ingrid’s old bed. I took pictures of this special time. I believe this was officially Oliver’s first time sleeping with mommy! The kids came in at the end and snuggled in there too.

We’re going back tomorrow to help but I don’t honestly know how much longer I’ll keep this blog going now that Oliver is home. I guess I’ll play it by ear.

Yeah, its true The Yore Family is spending their first night together at home in more than four months!!! We waited most of the morning for the discharge summary and the “order” from the doctor to discharge. When the nurse brought in the discharge I had to swallow back my tears (I was still nervous that they were going to change their minds) Silvia did not fight back the tears and when the nurse left we hugged so happily!!!!! Oliver was free to come home! There is soo much I want to write but I am crazy busy with Olivers meds and pumping, so it will have to wait.

Thank you to everyone for all the generous gifts, cards, dinners, house cleaning, gardening, play dates, visits to the hospital, grocery shopping and more! We truly feel blessed and loved. Your support in the last several months has been very needed and helpful. I will post pix later…

Claudia says Oliver is experiencing more withdrawals this morning, harder than yesterday. I remember Dr. Good (Pain Management) saying that the second day of weaning is usually worse than the first. His heart rate is high and he is acting restless. Claudia says he is consolable though, and is not necessarily having a bad day over it. They called Claudia last night at 11:30pm and scared the crap out of her, it was just that they had decided to move him upstairs after all. Ingrid and I are going to see Oliver now, while daddy takes Ingrid’s furniture to Oliver’s new room at home.

***
It turned out to be an OK day for Oliver. He did have withdrawals, but was able to feel better when mommy and I and Grandpa held him. His heart rate stayed high, even higher than yesterday. Dr. Good came in and changed his Methadone order, back to what it was the last time he was happy. This is what she said Claudia will have to do if she sees withdrawal symptoms. We’ll restart weaning again in a day or two.

We had a fun day at the hospital and giggled way too much. Claudia had a hard time pulling the plunger out of the feeding syringe and the look on her face while she was trying made Oliver very worried! We told him not to worry, because everything is totally under control. Claudia said, There’s going to be a learning curve, Oliver.

The big plans are still on for tomorrow. I have to say though that Oliver’s last location at the hospital is very nice! A private room in the north wing, with private bathroom and it’s so so quiet compared to where he’s been. The nurse was very attentive and helpful. Claudia pretty much did everything, and wow there was a lot to do! She’s pumping every 2 hours, for about 45 minutes. When she’s not pumping, it’s time to mix up the feed (breastmilk + fortifier), measure and pull up the correct amount, warm it in a warm water bath, prime the line, attach it to his line, push the plunger until it gets going, then hang it up somewhere. The feeding takes about 30 minutes, sometimes longer. By that time it’s time to pump again! The medicines need to be given together with the feeding throughout the day. Of course in between there somewhere she needs to pick up Oliver if he is not sleeping. Or go to the bathroom, or eat. I know she has some leeway to arrange her own feeding schedule when she gets home, and I think that will be one of the first things to be reevaluated.

One of the “teams” came in to do their rounds – Cardiology? – and said that Oliver is getting all his vaccines today. It was disconcerting to me to hear them talk about one particular vaccine that doesn’t have many studies behind it yet; they were debating whether they should give it or not. Fortunately the doctor in charge said Let’s skip it for now. Then Claudia told them that Oliver was experiencing withdrawal symptoms again today and they decided to forego all the vaccines, and do them as an outpatient procedure instead. I’m relieved, because this didn’t really leave Claudia and Tom any time to study the vaccines and make informed decisions. Plus, if Oliver had any reactions to the vaccines it would be all muddled together with his withdrawals, and his teething. It’s too much for him all at once.

Claudia asked about the shot Oliver is being given daily for anemia – Epogen. Kudos to her because it’s not easy to question a doctor’s orders, and even more difficult when that doctor is surrounded by 4 additional doctors. She wanted to know if the Epogen shots are really necessary, given that Oliver will not have blood draws anymore (they were taking them up to 6 times a day!), and that they have increased his oral iron supplementation. The doctor in charge said, I’m fine with discontinuing Epogen. Yay! Claudia will not have to give Oliver injections.

Claudia’s pediatrician in Los Gatos called TODAY and told her that she changed her mind, and her practice does not feel comfortable being Oliver’s pediatrician. So Claudia had to ask the doctors on rounds for a recommendation. They were flabbergasted that her pediatrician did that, so last minute, especially when she had already agreed to do it 3 weeks ago, but what Claudia told the doctors is true: better to know now that someone is not 100% capable of taking care of Oliver.

When the rounding doctors walked to the door, they said bye to Oliver. Oliver raised one of his little hands in the air and waved to them! It’s so cute, Oliver thinks that his hand is amazing (it is). He thinks he can touch anything he can see, no matter how far away it is!

At home, Tom was busy doing something to Oliver’s closet, and moving furniture into place. Andrew took Ingrid’s bed, chest of drawers, and organizer to their house. My dad helped Claudia assemble the new carseat at the hospital. Ingrid and I are coming to the hospital in the morning to help, and will help them get settled at home if they need it. Cecilia will take the kids out (there’s no school). My dad is coming to capture the big moment on film. Claudia was going to put Oliver’s clothes into the chest of drawers and set up his room tonight but now I think she might stay at the hospital overnight. On the third floor, nurses only check in every four hours, and we don’t know if Oliver will have withdrawals overnight too. Claudia’s wonderful friend Karen has put a lot of time into setting up housecleaning for the Yores, and they probably cleaned the house today. Claudia said the housecleaner is going to change thier sheets for them every week – I’m so jealous! Tom met with the medical equipment people, and they took care of setting up the oxygen (Oliver is going home with the cannula, on a low setting). Bella is busy planning a celebration party. I think they have pretty much thought of everything, and must be exhausted by now! I doubt if they will get any sleep tonight!

Oliver went through some withdrawal today, because his Methadone was reduced a bit this morning. It was mild though, compared to what we’ve seen before. His heart rate was high most of the day, usually around 170, and he was clammy and restless. I just read up on teething, and I think he might have one coming. He was drooling a lot today, and chomping hard on his binkie. I think fevers do sometimes accompany teething. This might explain why being latched didn’t seem to satisfy him sometimes, and he preferred the binkie. I also remember Claudia telling me a few days ago that she thought she felt something sharp in there.

Anyway, once Oliver was on mommy’s lap, he seemed to settle down and looked content again. He even dozed off for a little while. Later in the afternoon we got lots and lots of time to play with Oliver, and he seemed to be feeling OK again. I held him in my lap while Claudia pumped, with the children surrounding him. They stroked his head, sang him songs, and wiggled his arms around. They got a huge laugh out of him when they made his arms wiggle. He studied my finger for a long time and seemed fascinated by it. I saw him wave his hand a couple of times too, and stick his tongue out. He was trying out all the things he’s learned recently. Then Tana came in for the evening shift and held the little stuffed butterfly from his mobile close to Oliver’s side. He smiled at it several times, and held it in his fingers and touched all the parts of the butterfly. We left him playing with Tana and in a good place.

The nurses gave Claudia a schedule of weaning for Methadone and Ativan. According to this plan, Oliver would be finished weaning just before Thanksgiving. Last time, Oliver had a difficult time weaning once he got near the end. If this happens again, the schedule will probably need to be slowed down some. All his meds are oral now, and the line in his neck was removed. Unfortunately, they tried to put in an additional line last night without consulting with Claudia first! Two times they tried without success, and Oliver was upset for an hour. Apparently it’s policy to always have an IV when in the ICU. Claudia made sure they reclassified Oliver as “on the floor”, meaning, he is healthy enough to be on the third floor, there’s just no room right now. No more interventions unless authorized by mom!

I’m not sure how much they’re feeding him; it’s hard to tell because there’s a daytime schedule and a nighttime schedule. I know they have been increasing them to help him gain weight. Today, he did look chunkier! He looks great! But, Claudia was having trouble pumping the volumes required. They decreased it slightly tonight, because he has had good weight gain over the past 3 days. The doctors would like for him to gain an ounce per day. This is not a minimum, but a good rate of gain. According to the scales, he has gained a little over 8 ounces since the last weighing 3 days ago! His body seems to have been able to handle it, but we don’t want to push him too fast and risk damaging his gut. I’m happy to say that Oliver weighs more than he ever has, almost 11 pounds. This decrease will give Claudia a chance to build up a little reserve; last week the deep freezer in the PICU lost power and nobody noticed, so all her precious reserves of breastmilk had to be thrown out.

OK. Now hold on to your seats because I have some really good news that I am just bursting to tell you: Oliver is coming home!!! They’ve decided they’re going to make an exception for him, since he’s been in the hospital so long, and skip sending him up to the third floor. His heart is working well, his lungs are recovered and fully functional, and he is gaining weight again. Oliver is telling us that he is ready! Claudia and Tom have been trained and all their equipment and medicines ordered. His doctors (Pulmonology, Cardiology, Pain Management, Occupational Therapy, and Pediatrics) have been chosen. He is going to be discharged directly from the PICU, on…

MONDAY!!!

The boss gave me the OK to tell you, because Bella and Nathan already know. The Yore family is busy “nesting”, getting everything ready for their little peanut. Of course, they are thrilled!

Here are today’s photos. Enjoy!