Oliver looked great today! This was my first day seeing him without the ventilator. His skin looks peachy and his eyes clear and alert. His little lips are beautiful. It was so wonderful to be able to pick him up when he was fussy!

When I arrived, an occupational therapist was performing a test on Oliver, to see if he is ready to bottle feed. She was trying to bottle feed him but he wasn’t into it. The feeds go into his intestines continuously, so Oliver wasn’t hungry. The therapist decided that his throat might still be sore from the tube, so she’s going to let him rest one more day. I could tell she was disappointed, but not ready to give up on him yet. She’ll be back tomorrow. She said in the meantime, we could dip the binkie into breastmilk and offer it to him every so often. I did this a few times today, when he was relaxed. He kind of smacked his lips, really tasting it, and (I think) liking it. I really think we should only give it to him when he’s happy though, otherwise he may feel like we’re forcing it on him. I don’t know if he’s ready to use the binkie as a soother yet.

Oliver was fussy a lot of this afternoon. Something was definitely bothering him but I don’t know exactly what it was. I tried holding him a few times to help him settle, but what ultimately did the trick was firm patting and hand holding while he was on the bed. In the evening, it went from discomfort to pain, and the nurse gave him some Tylenol. This did nothing, unfortunately. The doctor came in and looked him over. I told her it seemed to me that his stomach was hurting. I had seen him poop 3 times already, and after each time he was calm and relaxed. When I was holding him I noticed he was having sharp pain, and sometimes he’d lift his knees up. She decided to prone him. I patted his back for about 20 minutes and he fell immediately, deeply asleep. I’m glad we figured that one out, because I don’t think he’d gotten much sleep today.

I also noticed some trembling in one of his arms. It looked like withdrawal to me. They had tried cutting out Fentanyl yesterday, but last night they added it back in because he was not doing well without it. The Versed and Methadone are still at the same dosage. Not sure about Ativan. The nurse told me his dosage of Fentanyl and Versed are very low, and I heard the doctor say this as well. I think they are going to restart weaning again tomorrow. 

We talked to Oliver’s new doctor, I think her name is Dana. She told us the general plan, which is to wean him off all the IV medicines. They’ve already changed one of his diuretics (Lasix) to orally. One more diuretic remains, plus some other medicines. She said they’re giving him something to dilate his bronchials (something like that!). They might cut that one out tomorrow. They still don’t know what is going on with his lungs. He is very raspy today, and just remembering how to cough. It could be all the changes he has just gone through. She said he might have had an infection that cleared up quickly.

Today was the first day that I was able to completely relax with Oliver. Sad to say, but I always have had at least a little bit of anxiety when I visit Oliver. But when I saw how he looked today, I felt so hopeful. I was able to hold him and really feel him in my arms. I was able to envelop him with my love, and give him the strong positive energy that he needs. It was heavenly!

Thanks to all of you for all the prayers and energy you have sent to Oliver and our family. What a HUGE miracle Oliver has received. We are forever grateful. Thank you to our friend Karen Boncher who has set up delicious dinners to be dropped off to us. Our group of friends, neighbors and community have really helped us out and we feel blessed. Who mowed our backyard this weekend? Wow! You still must be tired, it was super tall. We really appreciate it (and so do Chica and Indy)!

With our time spread so thin, Tom at work all day then at the hospital at night and me back and forth to the hospital all day and shuffling the kids, the meals and help has made our lives much easier. I think I have only gone grocery shopping about a half dozen times since Olivers been born!

We are excited about Olivers progress and are hopeful to have him home in the next few weeks. My sis Silvia will keep you updated (it has become a part time job for her)! Thanks again to all of you! Lots of hugs and kisses- Claudia

Mom says Oliver is doing great this morning. His CO2 has gone down to 37! He is receiving a little help from the cannula but the nurse says it’s not much. His heart rate is in the 120s. He was excited because Claudia was getting ready to hold him. I think she can easily pick him up by herself now!

Here are some photos from yesterday and today. Thanks, mom and Chris. Wow! His face really does look chubby!

Well I tried to update today but I’m not sure what happened. Oliver got extubated at 11:45 this morning and he did great! He didnt complain for more than a few minutes. He quickly went to sleep. Before he was extubated his co2 was 63. A half hour after removing the vent it had already dropped down to 58. This is the lowest his co2 has been since I can remember. Since then it has dropped to 56.8, then down to 56 and they just reported its dropped down to 50. So things are definately heading in the right direction. I held him today for a few hours as he slept. Then Lizzy held him and Cecilia too. He was up and looking around at everyone for about an hour and then back to sleep. Grandma and Tana are staying with him tonight until they turn him on his belly for the night. If all remains the same in the morning they will turn down the canula flow from 1.5 to 1 and then continue to slowly wean him from this aid. They also dropped the dose of versed and fentenol. Go Oliver!

It’s 3pm and I just talked to Tom. Oliver’s heart rate went back down, even down to the 100s. Dr. C told them not to watch the numbers too much, but to look at Oliver instead. Speaking of numbers, Oliver’s CO2 has come down and seems to be better without the ventilator! Tom said you can see how much more his face has filled out, now that he’s not all covered up. He seems very alert and relaxed. They have the canela (sp?) under his nostrils. This is unobtrusive and doesn’t bother him but it gives him air if he needs it and does not force it on him. He is still a little pale and maybe they’ll give him blood but not today. Claudia did get to hold him and he fell asleep in her arms. The next 24 hours are important. But if Oliver continues the way he is now, he will be mostly out of the woods!

Tom told me he talked to 4 different nurses. One of them had been there a pretty long time. None of them had ever heard of someone coming off of the transplant list because of an improvement like Oliver’s. This really highlights the miracle that Oliver has experienced.

Oliver’s extubation is done. They’re giving him some meds now to keep him relaxed. His heart rate is 170. Dr. C congratulated everyone on a job well done. Mom didn’t say anything about a CPAP. I hope they’ll let Claudia hold him soon.

Extubation is a potentially scary procedure. Congratulations, Oliver! You made it through the first part of this particular battle. We love you like crazy!!!

Its a really big day for Oliver and he doesnt even know it yet! Yesterday they started him on a steroid to help minimize swelling from the tube in his throat. He will get a total of 4 doses. The drs also began to slowly bring down the doses of versed and fentenol, they are doing this super slow so that he doesnt start any withdrawls. The 2 heart meds capdiprill and milrinone will also start coming down.

Last night they did a small procedure to Olivers existing line because it was not drawing blood anymore, it seems to have gone well.

The last four days for Oliver have been pretty good and very uneventful which he really needed. I did get to hold him 3 days in a row! If he is awake, I notice an excitement in his eyes when we start the big move to mommys arms! He knows whats coming.

 The other day Oliver occupational therapists came by to to do some excercise with him. She stretched him and showed me a couple of ways we can start moving Oliver so that he can gain some strength. She did say that she thought socially he was right where most babies his age are, and developementally he will catch up. Olivers weight is now 9 lbs/ 4oz!! His nurse, Kyle actually referred to his legs as chubby! He has been feeling alot better these past 4 days, very flirty and even tossing out a few beautully sweet smiles! We are all super excited and nervous today- I have a good feeling about this! No matter what, I get to hold my sweet little baby today without the help of 2-3 nurses. I will be able to move him around without feeling anxiety for safety of his ventillator, ah how freeing a day it will be for you Oliver! I will try to post as soon as I can as my wonderful sis Silvia is on vacation in their new RV.

I saw Oliver only for a few minutes today. He was just falling asleep. Everyone said he’d been up and playing. I noticed he looked pale and I asked Dr. C about it. He said Oliver’s hemoglobin is low, but he’s not going to transfuse him today. The ventilator was turned all the way down to 4 because they were sprinting him. I heard his sprint last night went well. He is scheduled to be extubated at around 10am tomorrow.

I don’t know how often I’ll be able to update this blog over the weekend. We may or may not have internet. But take a picture anyway and send it to me. I can always post them when I get back on Monday.

Here are the ones from today.

I saw Oliver only for a couple of hours today. When I came in, Grandma was holding him and he was mostly asleep. Then we switched and I got to hold him for about an hour. I noticed he coughed and sneezed several times, and his chest was very rumbly. His ventilator setting was at 14, but I don’t know if that has anything to do with it. I peeked at the machine and read that he was breathing 25 on his own. Seeing that he was doing more than half the work made me feel hopeful. Dr. Cornfield told mom they plan to extubate him Saturday morning. Tonight at 9pm he is scheduled for a sprint. The nurse told me his gas numbers were good. That means his CO2, but I never found out exactly what that number was. His heart rate was 130-150. At the beginning of my visit, his color looked purple to me. But when I left at 5pm, he was looking peachy and perfect.

Mom said he was having a good day. It seems like he was asleep mostly in the morning. At around 4pm, he woke up and he was energetic. At first he was moving his arms around a lot, not in a frantic way, just like he was excited to be awake. I had to monitor his hands constantly to make sure he didn’t pull off any tubes. I could tell he wasn’t uncomfortable or trying to take the tubes off, it was more like an interesting thing to explore. I reached for some mittens. Unfortunately I could only find one. So I stuck a little sock on his other hand. He saw it right away and began waving that arm around wildly, watching the sock go all over the place. He was fascinated by that sock on his hand. I put his elephant and hanging mirror in front of him to try to focus his energy. After about half an hour, he had enough of the toys and began looking at me. I said a bunch of baby words to him and he watched intently. He didn’t try to copy me this time, just watched me in a very calm way. Then he sneezed a big sneeze and his little face got all red and I could tell he was disturbed by it all. I imitated his big sneeze, throwing my head back and making a loud noise. He loved it! I think I might have seen a big laugh! His mouth was open and his eyes were totally smiling at me. I sneezed for him some more, until I began to feel silly. Anyway it was already time for me to go : (

The most wonderful thing about today was seeing Oliver looking so much like a regular baby. Skin peachy, eyes very alert and bigger than ever, squirming all over the place in excitement, watching everything around him. Even a little fuller than yesterday. He is really looking good!

Oliver, I hope your sprint goes well tonight. I hope this weekend’s transition goes smoothly. I can’t wait to see your beautiful little face again on Monday!