Today Oliver did not receive a tube to his intestines as planned. Dr. Rosenthal told Claudia that Oliver’s CO2 levels were high and that he needed to be intubated. Instead of the CPAP (forced air through his nose) they inserted a thin tube into his mouth, all the way down into his lungs. He was completely sedated for this procedure. Intubation is for long term use. It does not come in and out. It will not irritate his nose like the CPAP, and there are no seal problems. It’s very reliable, continuous, and adjustable. Patients cannot make sounds while intubated, and usually need some sedation while intubated. He does not have that big tube in front of his face anymore. So you can really see how handsome he is now!

When I arrived at the hospital, I was nervous. He had been intubated at around noon. I didn’t know what to expect. Cecilia was there waiting for me. At first I felt freaked out that this thing we’d been dreading had happened. But, then I saw that Oliver was sleeping peacefully. His respiration was optimal, his heart rate low. His breathing looked smooth and natural. What a difference from just a couple of days ago! He looked wonderful. During the rest of the evening, he had quite a bit of awake time. They start out the sedation level very low, to see what his needs will be. Some babies need a lot, some need none. A few times, Oliver became aware of the tube in his throat and gagged. Apparently, it touches the place that activates the gag reflex. The nurse assured us that he cannot choke, but still, it’s hard to see him noticing it. He vomited a couple of times too. Probably because he hadn’t eaten in a couple of days. All this happened quickly and resolved quickly. Cecilia and I were there with him the whole time, patting him and stroking his hair. There was some air in his stomach that kept needing to be vented. These are all little things that need to be watched and adjusted. The nurse said by tonight the medicine will take full effect and he should be relaxed consistently, without anymore gagging.

I met a couple of the nurses in the PICU. One of them told me that Oliver was moved to the PICU/CVICU (cardiovascular ICU) because these types of interventions are their specialty. Once they realized he would need longer term help with breathing, that is when they decided to move him. I like his new surroundings better. There’s more room, and they’re not strict about family members. The lighting is dim and the nurses seem more relaxed. It just doesn’t seem as intense.

By the time I left, Claudia had arrived and she and Oliver were very much enjoying each other’s company. He was awake with Cecilia and I, but kind of in a bored (?) way. Once Claudia arrived, he became a whole new baby. His eyes opened wide, and he started really looking at her, and at objects in the room, like his monitor. It’s obvious that her presence invigorates him. He seemed to forget about the tube in his mouth. And I know that she was happy with how great he looked.

When you look at these photos, you can see how he looked -before- Claudia, and -after- Claudia.

Sorry it’s been a few days since I’ve given an update. My daughter and I were sick, plus I just didn’t want to bump down that adorable photo that Claudia posted. People have started asking, so here’s what little I know.

Oliver’s doing fine. Probably still getting used to his new surroundings. He has a bigger crib, and just one roommate. It seems like access is more relaxed at PICU, so we should be able to visit more often, with possibly more than 2 of us at a time. Yesterday was a day of multiple interventions, which is never easy. He either is, or is going to be, fed directly into his intestines now, instead of into his stomach. As you know he has been having trouble digesting lately so this should ease the workload on his system overall. One of the sensors on his heel (oxygen?) was moved to his neck where it will give a more reliable reading. He had some sort of dye test and they took some x-rays.

I’m going to the hospital today and am planning to take a lot of photos. In the meantime, please enjoy mom’s photo from yesterday.

True Love that is between a little peanut and his elephant!!!! It so sweet the way Oliver just stares at his new friend. Oliver did get moved last night and he seems very calm in his new environment. I am sure his new nurses will love him as much as the old. Thanks Chris for all that you do! Your next patient is soo lucky to have you!

I didn’t go to the hospital today but my sister Cecilia said that Oliver was moved to a new area. It’s the PICU – pediatric intensive care unit. Before he was in the NICU – neonatal intensive care unit. In the NICU they take care of all newborns, and Oliver was in a special room for cardiac babies. In the PICU, the patients are not all babies (Oliver’s roommate is 8 years old), but they are there if they have serious problems like heart defects. They told Claudia that Oliver will eventually be in this room anyway, once he undergoes his transplant. It was an abrupt move though, and I think it may have had more to do with Claudia and her family, than with Oliver. But that’s just my suspicion. It does seem from what Cecilia was saying that it’s a better fit there, with more room for visitors and a more relaxed atmosphere overall. Unfortunately though, Chris will no longer be Oliver’s nurse.

This morning mom said that Oliver had gained 70 grams! Also that his numbers looked good. Cecilia, who was there in the afternoon, said that he was up for a long time today, playing with Claudia and being pretty happy. I’m hoping that the diaper rash went away, CPAP fits better, and there’s no more blood in his stool. But I won’t know for sure until tomorrow. Anyone have a photo to send my way?

I’ve been learning a little about NEC on the internet. Here’s a good explanation article, if anyone wants to know more:

http://kidshealth.org/parent/medical/digestive/nec.html

As usual, my previous post about this was not entirely accurate. Blood in stools is a symptom of NEC. It occurs mostly in pre-term/NICU babies. Breastmilk contains protective factors against NEC. I don’t understand why Oliver’s doctors are taking away his breastmilk. One of the causes of NEC may be excessive volume/ speed of feedings, and the intestines just can’t keep up. Or they say it could be something in formula itself. Babies that drink formula exclusively have 6-10 times more. Babies fed formula + breastmilk have 3 times more. Babies that drink breastmilk exclusively have the lowest chance of getting NEC (although it does still happen). Here’s the reference for this data:

http://bpsu.inopsu.com/publications/reports/nnec.html

I’m hoping Tom will ask the doctors more questions about this.

to the person who put Oliver’s name on Sunday’s mass at my mom’s church. It was very touching for her to hear everyone praying together for Oliver.

Also, to Andrew’s cousin Katie. When we were in St. Louis we found out that the members of Katie’s church group were all praying for Oliver and that they had been following his journey through the blog. These are young adults who have never met Oliver, nor any of us. We were very moved by this.

I’m back from my first visit in 6 days. Oliver looks HUGE! When I first walked up, I had to read his name tag to make sure I was at the right crib! He was laying on his side looking in his mirror. He seemed relaxed, just checking himself out. His stomach feeding tube is no longer in his nose, because it was getting in the way of his CPAP. It’s now in his mouth, and he was kind of chewing on that, using it as a pacifier. I thought about picking him up, but the nurse there really didn’t want me to, and I could see that he was content looking in that mirror, so I just kept my head in the crib and talked to him for a long time. I held his hand too. Today was my first day in the NICU alone. Tom talked the hospital into letting me have special access, because Claudia wants one of us to be able to go in there without her. Mom has this special access too. I get the feeling the hospital staff is not happy about this exception to the rule, but honestly, I really don’t care. The CPAP is intimidating to me. I’m scared to knock it off of him because that will agitate him and negate any soothing I provide while I hold him. But with practice I suppose I’ll get used to it. It was wonderful to be able to stay a long time with him, even if it was just staring at him and talking. He gave me only a quick glance, then went back to the mirror. I guess if it’s not mommy, it’s not worth looking away from the mirror for!

I got so lost in looking at him that I forgot to take his picture while he was awake. I came back later and took one but he was asleep.

The blood in his stool is called NEC and they think it is caused by something he is not digesting well in breastmilk. It seems like breastmilk is always the first suspect. But, that is the main change they have made recently, so they’re going to give him all formula again tonight and the next few days, to see if it clears up. It could just be that his heart is working so hard and when energy is scarce, the intestines suffer (other organs have higher priority, according to the doctors). Or they’re saying he might be allergic to something in mom’s milk, but that seems unlikely because the “allergies” seem to come and go, although Claudia’s diet doesn’t vary all that much. Anyway, going to the pre-digested formula may do the trick, because it may ease the burden of digestion and allow the intestines to heal. Like everything else, time will tell. He also got a blood transfusion today. These don’t seem to be a big deal anymore. They just do it whenever his blood is starting to get anemic. He slept through it.

Toward the end of my visit, Tom was talking to the Respiration specialist and they changed the prongs in his nose (part of the CPAP) to a smaller size tubing. The goal is to reduce his discomfort. The other tubes had been rubbing him a lot, causing sores and bleeding. No wonder he hates it! The nurse was reticent to make the change, and I really think it helped that Tom was there instead of Claudia. Tom just doesn’t look like the kind of person you can easily intimidate. She reluctantly allowed the change and poor little Oliver screamed over it, but settled down in a couple of minutes. It was hard to see him so upset but knowing that these smaller tubes might ease his discomfort in the long run helped me to feel OK with what they were doing.

The nurse told Tom Oliver had lost a little bit of weight. I can’t remember how much it was. But this is to be expected. Somedays, he is working very hard and burning calories. I didn’t feel worried given how big he looks compared to 6 days ago.

Bella, Nathan and I finally went and bought a funny elephant to hang over Oliver’s crib, and he loves it! Its so easy to forget all the simple pleasures that babies love in the sterile environment of the NICU. He stared at it and actually batted at it yesterday. it was so cute to watch his eyes in full amazement. He was so content and peaceful. His heartrate was very relaxed as he quietly stared at his new friend. I was almost jealous!

Today it was difficult for me to focus on my mission to be positive and happy. Its hard to take in information from the doctors and nurses, and still stay in my happy place. I will do it though because life is so uncertain that I want to enjoy it fully and know that it will benefit not only me but my family as well. I want to enjoy every minute that we have with Oliver instead of worrying about what the future may hold for him. I find so much peace and tranquility when I have Oliver in my arms, he helps me to remember what life is all about! He helps me to overcome my fears and to cherish each day.

There was no change in the echocardiogram. Oliver gained 3 grams in the past 2 days. The doctors found some blood in his stool and they’re going to start him on some antibiotics. Other than that, things are about the same. I’ll update tonight after I visit him. Here’s mom’s photo from yesterday.

Well picture day was pretty hectic and slightly tramatic on poor Oliver. Our photographer, Richard was great- even though Oliver was not willing to cooperate. He really just wanted to sleep and be left alone, but we took off the CPAP for a short while and took some cranky pix of peanut- who is NOT so tiny anymore! It was great to hold him without the complication of the CPAP, even if it was just for a short time…