February 14 - Happy Valentines Day!

Oliver was so very wide awake and happy to see me this morning. I held him and we smiled at each other (ok, I did most the smiling) for nearly an hour! He is really starting to check out the world around him.

Oliver had another perfect blood gas check and is holding his own in the respiratory department. No changes to his diet-the nutritionist did ask to run labs on him next time we take blood to make sure he is absorbing enough vitamins. He had platelets last night and again this morning. His nurse today asked if we can draw labs once a day and still give him platelets twice a day since he almost always needs the platelets anyway...one less blood draw every day for Oliver! His Doctors agreed that since we aren't treating him for anything right now it would be fine to draw platelet levels once every 24 hours. Also, the IV in his scalp has served it's time, as has the PICC. There is a bigger PICC they can replace the old one with that allows nurses to draw from the PICC instead of having to poke him-and they can still give products through the same line. This means Oliver would be down to one PICC line, no IV AND no more pokes! As you can imagine, no one wants to put a hole in Oliver and risk it bleeding endlessly (plus it's just plain sad to make a baby cry!)

No changes to Oliver's medications and all test results that are back are negative...There is a new test that has to do with the clotting proteins in the blood that will be run next week.

Hope you are all having a wonderful Valentines day! 

February 13 - Oliver keeps us guessing

Mr. Oliver looks good today. He was awake this morning and the nurse brought in a mobile for him to look at. He has to keep socks on his busy hands to stop him from pulling out his cannula and feeding tube. Over the last few days Oliver has been unusually sleepy...but he had a few periods of being awake and interacting with us today :)

We got the results of his bili and it went up a bit...I was SO hoping it would continue to drop! Oliver's platelets were at 14,000 this morning so he didn't get a transfusion until this afternoon. He had a fever last night and his Doctor started him on antibiotics just to be safe. All of the tests that came back today were-you guessed it-NEGATIVE! I'm beginning to think Oliver is incapable of testing positive for anything!

At rounds this morning Oliver's Doctor reported that his respiratory status has improved slightly. The nutritionist raised Oliver's calories again-we are just continuing to take tests and review test results... boy this kid is a tough nut to crack!

February 12 - No news is good news?

When we arrived to see Oliver this morning he was all tucked into a big boy crib! He lost 40g last night (which is actually a good thing because he's retaining so much fluid). At his last weight he was nearly 8 1/2 lbs!

There is a lot of empty wall space in Oliver's room and his nurses said it would be ok to put things on the walls. I would like to invite everyone to send photo's, prayers, letters of encouragement, drawings (this means you Jack and Jillian!) -anything you would like...we will start a wall of love for him that we will save in a scrap book for Oliver. The address is:

Oliver Bond - Building C Room 206

Ronald McDonald House

5130 40th Ave NE

Seattle, WA 98105

Oliver is still stable and strong. He only has labs every other day now, so we have to wait until tomorrow to find out if his bili continued to drop after yesterday...he had two platelet transfusions yesterday (tends to be the norm for him) his platelet count at 4:00AM was 8,000. There are no changes in the orders for his medications or diet. We are continuing to watch his respiratory rate but as of now he is doing great and doesn't need additional support breathing. After reviewing Oliver's medical records from Sacred Heart the IVIG was not correlated to Oliver's big bump in platelet levels while he was there.

So to wrap things up we still have tests out, and everything that's back has been negative. Sean and I both feel like Oliver looks better today...and his grasp is stronger...for now we will just keep holding him and loving him and kissing his sweet face! ;)

Jack and Jillian's friends Scorch and King playing with Oliver 

February 11 - Pictures!!!

Pictures! Finally!!!

First time meeting Oliver!

Big sister Jillian holding Oliver

Sweet baby

Big brother Jack watching over Oliver

Snuggled up sleeping

Fun at the aquarium

Good morning little man!

February 11 - Two weeks old!!!

Mr. Oliver had a spontaneous decrease in his bilirubin count today-HOORAY! Hopefully this continues to happen. Last week his liver specialist said it's rare, but sometimes the liver just fixes it's self and they never really find out what was causing it's decreased function...I sure hope that's what's happening! Besides not processing the bilirubin his liver is still doing everything else it's supposed to do.

There have not been any changes to Oliver's medications. His breast milk is fortified with formula and they increased to to 28 calories per oz. His platelets were at 8,000 this morning so he received another transfusion. When he was at Sacred Heart he was given a dose of a medication called IVIG and following that dose his platelets went way up (and stayed up for a bit) so we are looking at his records to see if it's worth trying to repeat those results. The metabolic genetics team is considering doing a skin biopsy but with his risk of bleeding it's out of the question for now. If the IVIG works to keep his platelet levels high we might have a good window to do the skin biopsy.

The x-ray results from yesterday came back and since his organs don't look worse his Doctor didn't advocate for any change in respiratory support. Oliver also had a blood gas done this morning and it was beautiful! (A blood gas test measures the pH levels and the levels of oxygen and carbon dioxide in the blood. It's a good way to measure how well his lungs are moving oxygen into the blood and carbon dioxide out.)

Oliver had another blood draw for the Hematology team today, and it should be back by the end of the week. As of right now there are 9 tests pending and a line of people waiting to do more tests. My hope is that Oliver just starts getting better. I don't even need an explanation!

I'm sorry I haven't been able to post pictures lately...I'm not sure what happened to my laptop but I am unable to connect to the internet and the public computers I have access to won't allow pictures to be uploaded...Sean has some ideas so hopefully we will bombard you with photo's soon!!! :)

February 10

We missed rounds this morning but were able to catch up with a couple of Oliver's Doctors and get some questions answered. The Dr from infectious disease said they have tested for almost everything they can think of in their department. There are three more tests he will order and after that the infectious disease team is pretty much on standby...

The other Doctor we spoke with let us know that another ultrasound and x-ray were ordered for Oliver today to check on his major organs. His liver and spleen continue to enlarge, which is making his belly quite big. The swelling organs are pressing against his diaphragm and lungs making Oliver work harder to breath. His body gets all the oxygen it needs from the air in the room but since he can't expand his chest completely to breath we have increased his oxygen level-I believe he is currently at 22%. The concern here is that the space in Oliver's chest cavity could get so limited that sometime down the road he may need a ventilator to help him breath. This would only be temporary and is not a sign of decreased lung function-it is just a precaution that would be taken if Oliver has to work too hard to breath.

Oliver's Doctors lowered the threshold for platelet transfusions to 10,000. If he tests above 10,000 platelets they won't give him a transfusion...this morning he didn't need one!

We were told the liver specialist is optimistic about Oliver's liver coming through all of this just fine. For starters the liver is wonderful at regenerating it's self, but also because Oliver's liver is continuing to do everything it is supposed to do. The only thing that his liver is struggling with is the bilirubin...which is what makes Oliver that lovely shade of yellow.

As frustrating as it is not knowing what's causing Oliver's low platelets and high bilirubin we have to remember that every day we are scratching something off the list, and the list of possibilities gets shorter and shorter...we have got to be close! Thank you all for your thoughts and prayers-we are so blessed to have such wonderful friends and family supporting us through this!

February 9

Sean did his first 'kangaroo care' session (holding Oliver in his diaper on Sean's bare chest) with Oliver last night...I don't know who enjoyed it more, Sean or Oliver ;)

I wish I had something exciting to report, but there haven't been any developments in what is causing Oliver's low platelet count or his liver dysfunction. His platelets bumped to 44,000 following last nights platelet transfusion (the biggest bump we've seen in a while!) but fell back to 10,000 by this morning. He is still eating breast milk but we've only been feeding him through the feeding tube. He was too tired to try breast or bottle after the bone marrow biopsy and I'm waiting for Monday when his regular Dr.'s are back to ask about breast feeding...there are far fewer Dr.'s at rounds on the weekends and they are different than the Dr.'s we work with during the week. 

Hematology called us last night and said the bone marrow biopsy came back negative. There was more tissue in the sample than they had hoped, so they are going to draw blood tomorrow and do another test...I suspect this week will bring lots of new tests. We are anxious to start helping Oliver's body recover from this!

Thank you all for your thoughts and prayers...Jack and Jillian will be returning to Sandpoint tomorrow. It was wonderful seeing them and we will miss them!!!