February 26 - Oliver gets to nurse!

Oliver is improving! He lost another 310 grams last night, and has decreased his respiratory support again today. He is down to 3 ltrs. of high flow and his cardio is totally stable. His platelets were at 5,000 this morning so we are checking his level again now...he will probably need a transfusion this evening but he is cruising right along! He is having an easier time breathing so this morning his doctor said I can nurse him-not dry nursing-not limited nursing-he can nurse as much as he wants! This is the first time he has ever been allowed the freedom to self regulate his food! We tried it out today and he did wonderfully! He tuckered out before his belly was full so they still fed him through the feeding tube, but he did great!

When Oliver is off the high flow he will be moved to the cancer care unit. Sean and I are taking a tour of cancer care this evening. We are told the rooms are much more family friendly. We have a couple wonderful nurses in the NICU who we will miss greatly. It is so nice having a nurse who's been with your baby and knows what he likes, doesn't like and what his normal behaviors are. :)

Today is a good day for all of us...the kind of day where you see progress. 

You feel love and you just know everything is going to be ok. 

This is Oliver just after his first time nursing...I think he liked it!

P.S. We received an adorable stork finger puppet in the mail but there was no note inside....will whoever sent this precious gift please let us know who you are? 

February 25 - Keep those prayers coming!

Oliver is having more and more periods of being awake-so much fun for Sean and I to get to see his beautiful eyes! Yesterday was a big day for our family. We decided to go ahead and start Oliver on chemotherapy. I get choked up just writing those words. This was not an easy decision to have to make. The steroids appear to be helping Oliver and the hematology/oncology team thought starting Oliver on 1/4 of the dose of etoposide (chemo) that they would normally use for his weight was a better idea than starting him on a full dose. I know I said this in an earlier post but I want to repeat Oliver has not been diagnosed with cancer (or anything for that matter). We are treating him for HLH without diagnosis because HLH is one of the top contenders and if untreated Oliver would deteriorate quickly. There are still some tests out for metabolic disorders that are being considered, but they take weeks to get the results and if Oliver has HLH we don't have that kind of time. If we discover that Oliver does not have HLH they can stop giving him the chemo drug. He doesn't have to be weaned off of it.

At rounds this morning everyone was happy with how Oliver is doing today. He has great urine output and is down 300 grams in weight (remember, this is a good thing right now!) His respiratory status is showing improvement and they are turning down the air flow in his cannula from 6 ltrs. to 4 ltrs. His respiratory rate has slowed to a normal rate and he is not working so hard to breath anymore. He is receiving about 1 platelet transfusion a day now instead of two and he's only getting half the amount of platelets he was getting before. This is because they lowered the threshold to 5,000...his bilirubin is also down and he looked slightly less yellow this morning :)

Because Oliver is on chemo we have to be extra careful with his body fluids. The nurses wear a gown, full face mask and double gloves to change his diapers. Yesterday Sean was holding Oliver and when the nurse came to check Oliver's vitals she gave Sean a confused look and asked if he was sweating...NOPE! Oliver had soaked his diaper...through the blanket and onto Sean! Sean returned home with his shirt all squished into a biohazard bag. Because he's on such a low dose of chemo the doctors aren't really concerned with Sean's exposure. Thank goodness!

Thank you to all of Sean's awesome co-workers at ATI for making two giant posters for Oliver's room! We love them and appreciate you thinking of us and cheering for Oliver! Not only can we feel their love and support but Sean's team at work has graciously picked up the enormous vacuum created by his absence. ;) Sean's boss Bill has been incredibly supportive of Sean taking as much time as he needs to be here supporting Oliver. We feel so blessed that Sean has such an amazing work family. Thank you all again!

So many of you have reached out to us and I thank you all! Please don't stop!!! 

February 23 - Lazy Sunday

Nothing new to report with little Oliver. He is still holding his own! His Doctors are considering starting chemo Monday or Tuesday. We will do more tests this week to see how he is responding to the steroids. His platelets were below 5,000 yesterday afternoon so he was given another transfusion (half of what he's been getting) and at 4:00 this morning they were at 8,000-that's progress! His belly continues to grow...his bili and blood gas will be checked tomorrow and his electrolytes are being scaled back from every day to twice a week. He is getting off TPN (nurtition through the IV) and had the IV removed from his left hand...so now he just has the PICC line :)

Oliver sleeping in on Sunday morning :)

Oliver rested well last night without the use of pain medications. Sean and I requested that we be given the opportunity to come hold Oliver when he's upset before any pain medications be given. The Doctor gave us the thumbs up and we stopped the use of morphine. We also asked if Oliver could have a swing to help sooth him-which worked like magic! He loves it and is off narcotics! Win-win ;)

February 22 - Pictures!

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February 22 - Oliver gets a private room

Our sweet Oliver has quite a temper! I think the steroids are to blame...we held him for more than 9 hours yesterday and as the nurse said he fussed for almost an hour and a half after we put him down. She gave him a little benedryl to see if that would help (one of his medications is known for making your skin itch) but that didn't help. She fed him, but that didn't help. She eventually gave him morphine and he calmed down and slept.

The physical therapist came yesterday and measured Oliver to make him a more elaborate bed...she used a wedge of foam and carved out a hole for his belly so that Oliver can lay on his tummy without putting pressure on it. The goal was to let gravity pull his organs down and create more space for his lungs so that he doesn't have to work so hard to breath. He didn't seem thrilled about it...so they made another one that would support him on his back (or side) with straps to help keep him swaddled. He seems to enjoy this bed a little more.

Medically things are changing for Oliver. He has been on the steroid dexamethasone (dex for short) for almost 5 days now. Yesterday we saw a significant jump in his platelets-he went up to 34,000-but at 5:00pm yesterday he was back down to 13,000 and at 4:00am he was at 6,000. His Doctors and hematologists have decided to lower the threshold for giving platelets to 5,000 so he hasn't had any blood products for 24 hours now. The thought behind this lower threshold is that his liver could be bogged down trying to get rid of all the platelets we're pouring into him. He will have his platelets checked again at 4:00 this afternoon. They will almost certainly be below 5,000 and he will get another platelet transfusion. The transfusions will only contain half the number of platelets he was being transfused with before.

Oliver still has not been diagnosed with anything. There are very few, specialized tests that are still being done but it is common for infants not to present with textbook symptoms of a disease or disorder. The closest we are to a diagnosis is a disorder called HLH (Hemophagocytic lymphohistiocytosis). There are 8 characteristics of HLH and in order to be diagnosed with it you must present with at least 5 of the symptoms. Oliver has 4. My basic understanding of this disorder is that the immune system goes haywire-the best treatment they have is a form of chemotherapy. Just to be clear, Oliver does not have cancer. In this case the oncologist would use chemotherapy to lower his immune system and sort of 'reset' it...Oliver's Doctors do not feel comfortable diagnosing him with HLH, but are keeping a close eye on him and continuing to study his blood work closely. He was moved to his own private room (aka-isolation) in case they decide to begin chemo. The dose of dex that he receives is consistent with the dose given to children on chemo and only his hematology-oncology team administers it. We continue to pray that Oliver's Doctors are able to treat him and that we will be home soon with a healthy, happy Oliver.

We miss the heck out of Jack and Jillian and are so thankful for Jenni who has taken them under her wing. Hearing the joy in their voices when they tell me about the adventures they have been on with their friends and the excitement about their days at school lets me know that this is much harder on me then it is on them! Thank you Stacy for sending pictures and videos of them...It truly does take a village to raise a child and I really couldn't ask for a better village! Much love and thanks to all of you!

February 20 - A thankful day...

Sean and I spent some time today counting our blessings. Through all of this we are realizing how fortunate we are to have such amazing friends and family who have all reached out to us through prayer, helping with loose ends back home, financially and taking care of Jack and Jillian. We have love and support everywhere we look and we can't begin to express how comforting it is to know how many people are cheering for us.

Having the Ronald McDonald house has been priceless. Having a place to rest is so important. We are within walking distance of the hospital and they prepare meals here several nights a week. Staying this close to Oliver would be out of our reach without a program like this.

Also, to have a baby born in a country with amazing medical facilities and for Oliver to be receiving care at the best children's hospital in this corner of the country. To have kind, caring nurses and Doctors who involve us in Oliver's care. We are extremely thankful!

Oliver seems to be doing a bit better today. His belly is slightly smaller than it was yesterday. Because of his swollen spleen and liver his abdomen is distended and was growing about a centimeter each day. He was at 45 centimeters yesterday and today he went down to 44 centimeters...the first decrease in girth he's ever had! His breathing is still strong and today his Doctors allowed him to go back to full feeds of breast milk. We still aren't fortifying my milk with formula-and the most exciting part of the whole day? The Doctors agreed I could let him try to latch and do a little nursing! He hasn't nursed before, and they expected he would tucker out rather quickly but we tried and he latched beautifully! He ate for a few minutes before falling asleep. A big, exciting day for all of us! Since Sean can't nurse Oliver he called dibs on burping him and was able to get a big burp from little Oliver right away ;)

P.S.
A special thank you to Elyjah for the beautiful painting you sent to Oliver. It is the very first masterpiece to be hung on his wall and I am sure he will love it as much as we do! Thank you for thinking of us! We appreciate your thoughts and prayers.

February 19 - A room with a view!

When we went to visit Oliver last night we found that he had moved to the other side of the room...right next to the window! It has been unusually sunny here in Seattle, and it's nice having the natural light in our room. Oliver also got a bigger bed! I think he's schmoozing the nurses ;)

Oliver started steroids last night, but he was still a little snooze puppy this morning. He will probably have more periods of being awake after the steroids are in his system. His stools are clear of blood and he was allowed a small amount of breast milk this morning. If he tolerates it well he will be allowed to eat more and more! On Friday all of the doctors and specialists who have been watching Oliver will be meeting with us to see how he's responding to the steroids and decide how to further treat Oliver. He still falls short of being diagnosed with anything, but there are some things on the table that can't be ruled out...we will see where the conversation leads us on Friday.

Yesterday my brother Jonathon and his friend Stephanie came to visit Oliver. I think Oliver was happy to meet them :)

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Stephanie and Oliver

Jack and Jillian have aged considerably since we've been gone. Their teacher recently sent me this picture of them in their 100's. Poor Jillian is missing all of her teeth, but they appear to be happy and that's what truly matters!