Wednesday, February 26, 2014

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? 

Tuesday, February 25, 2014

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!!! 









Sunday, February 23, 2014

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 ;)


Saturday, February 22, 2014

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!

Thursday, February 20, 2014

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.

Wednesday, February 19, 2014

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!





Tuesday, February 18, 2014

February 18 - The battle continues!

 

Our sweet baby has been so sleepy lateley but that hasn't stopped us from snuggling him! We've seen some changes in Mr. Oliver in the last couple of days. As I mentioned before he has quite a bit of blood in his stool. His medical team decided to stop feeds and let his tummy rest. When we start feeds again he will have less formula in my breast milk. Until then he gets nurtition through an IV. This morning he had a tiny, blood-free smear in his diaper. His bili level dropped a little more, but some of the other blood levels (like red blood cells) have started dropping-Oliver recieved a red blood cell transfusion this morning following his morning platelets. His belly is continuing to grow causing Oliver to work harder to breath. They have increased his oxygen level to 30% and his high flow to 6 liters.

He had another blood gas which looked good and his heart rate is stable and strong. From a cardio perspective he looks great. Because of the recent changes in Oliver's health his Doctors have agreed that starting him on a steriod would benefit him. More info on this to come-I will try to update again tonight. Right now Oliver is getting his new PICC line so I had a few minutes to update and wanted to fill you in. We will be meeting with the Hematologist, Oncologist and maybe even the Rhumatologist this evening to discuss any possible diagnosis they can collectively come up with. As of now I think almost every other department is out of ideas.

I had blood drawn today to check for Lupis. Oliver isn't presenting many signs that would suggest he has Lupis, but it's something that hasn't been ruled out.

We are crossing things off the list left and right! We appreciate your support and prayers and take comfort in knowing how many of you are cheering us on! We expect victory!

Sunday, February 16, 2014

February 16 - Slow Sunday

It's official-our little Oliver thoroughly enjoys being held. He has started to show us that he strongly prefers being in our arms and sleeps much more soundly and for longer stretches when we're holding him. If we aren't there he is happiest on his left side. He will tolerate being on his right side (though not for nearly as long) and he absolutely does not like being on his back. He also doesn't mind having his blood pressure taken but taking his temperature really gets his goat! It is so fun to learn his little quirks ;)

Rounds were pretty unexciting this morning. Oliver had a little blood in his stool early this morning so they are not going to feed him today in order to give his tummy a break. There is question about whether it's irritating his digestive system to have so much formula in my breast milk so when they start feeding him again they will lower the amount of formula they are giving him-which makes me happy because I really don't like having the formula in my milk in the first place. :)

Oliver's platelets were 11,000 this morning. The orders state that he gets platelets if he is under 10,000 but he got them this morning anyway. We have to wait until Tuesday for his next bili level but I am praying that it continues to drop. Otherwise we are just enjoying gazing at our little fighter and waiting for tests to roll in...




Saturday, February 15, 2014

February 15 - Weekend update

Mr. Oliver is just over 9 lbs. now! He has been more alert the last couple mornings and we've really enjoyed interacting with him. We have been blessed with fantastic nurses and the hospital tries to keep Oliver's nurses consistent, so they are really getting to know him-his likes and dislikes and can easily detect small changes in his behavior. He is in excellent hands!

I am beginning to second guess our decision to cloth diaper this boy...he seems to poop about every 15 minutes....something tells me we're going to be doing a lot of laundry ;)

Oliver's bili went down again today! His Doctors suspect his high bilirubin is from in utero hemolysis and bile sludging. My understanding is that this means there was an overload of blood cells and his spleen (and liver) were-and continue to be-overloaded with the task of breaking down and removing the extra cells. If this is the case, his bilirubin level should drop when his organs start to catch up and the problem should fix it's self.

We will be getting a new and improved PICC line-right now it's scheduled for Tuesday. Until then we are limiting the amount of blood draws...which means he will probably only have routine labs done until next week. Weekends drive me crazy! All the progress happens during the weekdays!!!

We got test results back today-not one positive result. I think HLH was a top contender but as far as I know HLH was crossed off the list today. We took him off the antibiotics, his platelets at 4:00 AM were 6,000, he received 2 platelet transfusions today and a blood transfusion (his blood count came back low this morning). Other than that everything is...exactly...the...same!

Sean and I are doing our best to be patient. We spend hours every day holding Oliver and smiling at his perfectness. He is quite the character and we love every minute of being his parents!

Friday, February 14, 2014

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! 




Thursday, February 13, 2014

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!






Wednesday, February 12, 2014

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 

Tuesday, February 11, 2014

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!!! :)

Monday, February 10, 2014

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!

Sunday, February 9, 2014

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!!!


Saturday, February 8, 2014

February 8 - one day at a time

I spent my first sleepless night holding our sweet baby last night...and I enjoyed every minute of it! We are only giving Oliver fresh breast milk right now (because of Jack getting sick in the NICU-we want those antibodies just in case) and they needed more milk before 3:00 AM so I headed over to the NICU at about 10:00 last night and little Oliver was fussy. I suspect he was working on a big diaper and his tummy was uncomfortable so I held him skin to skin  with some pressure on his tummy which settled him right down. The only problem was that every time I tried to lay him down he would wake up and start grunting and making the saddest pull-at-mommy's-heartstrings sounds-and back into my arms he went! This continued for a couple hours and then he decided he'd like to socialize...and since he's rarely awake I couldn't possibly walk away from those adoring eyes!!

I don't think I got back to the room until well after 2:00AM, and I'm pretty sure I fell asleep with a smile on my face.

Rounds this morning were pretty boring. He had the usual platelet transfers last night (he was at 8,000 before his last transfusion and went up to 14,000 afterwards)...he ate his share of breast milk, his respiratory rate is a little elevated but still good, all his cardiac stuff looks great, his only medications were lasix (to help prevent him from retaining too much fluid) vitamins and diaper rash cream. We are still checking his platelets every 12 hours. There are 4 or 5 tests out right now (including the bone marrow biopsy). So far everything is coming back negative. His platelet issue and his elevated bilirubin levels continue to be his only problems. More tests are being run almost daily. So the only thing on his agenda today is platelet checks and transfusions as needed.

Jack and Jillian haven't been back to the NICU since Thursday. I am confident they aren't sick, but we wanted to wait 48 hours just to be sure. I would like to get them in to see their brother again soon!

I have pictures to share, but my laptop has gone haywire and the computers I have access to won't allow me to save anything...I will keep trying to figure out a way to post some photo's but for now just picture the cutest baby on earth...that's what Oliver looks like ;)


Friday, February 7, 2014

February 7 - Testing 1-2-3

Finally! I apologize for taking so long to blog, for some reason I have had a difficult time accessing the internet...Oliver is doing fine-about the same as he has been, maybe even a little better with the exception of his liver and platelets. He had a bone marrow biopsy today (should have results back in a few days) and in preparation for that he received a blood transfusion and (of course) more platelets. His platelet check at 4:00AM was 12,000-which is actually higher than it has been :)

I was able to hold our sweet boy for a couple hours after the biopsy. He melts my heart and I can't wait until this is all figured out so we can be home neglecting our responsibilities and laying in bed gazing at our little fighter. Who knew babies were so tough!

His nutritionists have allowed him to go back to breast milk-we are very excited about that!! They did insert a feeding tube through his nose so they can supplement any feeds he doesn't take (or finish) orally. He is still on 'high flow' (the air through the cannula) but the respiratory specialist said his breathing looks terrific!

His billi levels continue to rise, but his liver is doing everything else it is supposed to do, so we are still looking at tests to help us figure out what's going on there. Every test result that has come back in the last two days has been negative...this kid is a tough nut to crack!

In addition to his PICC line, Oliver has to have an IV. It has been placed in his left arm for the last few days and this morning they removed it and inserted another one in his scalp. It looks horrible, but it is much more comfortable for him and the veins in babies scalps are easier to access. He seems to like being able to move his arm near his face, and I'm sure it's nicer without the IV in the way.

Jack and Jillian were able to meet their baby brother yesterday, however their visit was cut short because Jack threw up in Oliver's room! We have been giving Oliver the fresh breast milk instead of the colostrum today and will continue to do so- that way he will get the antibodies to whatever Jack has...if he has anything at all. The nurses seem to think it was a combination of nerves and all the junk food he ate. I hope they're right!

P.S. More pictures coming soon!!! ;)


Thursday, February 6, 2014

February 6-quick note

We are going to meet Jack and Jillian this morning and bring them back to Seattle to visit for the weekend. I just wanted to let you all know we will update the blog tonight and little Oliver is doing well.

XOXO

Wednesday, February 5, 2014

February 5-evening update

We spent most of the day with Oliver and he had a wonderful period of being awake this morning...we got to interact with him, hold him, feed him...pure bliss!

Oliver had two platelet transfusions last night. At rounds this morning his latest count was 9,000. His body is not holding the platelets. He is receiving another transfusion as I write this. His billi continues to rise a little at each check (to be expected considering what his liver is going through). He is eating well and his nutritionist lowered the amount of food he's taking through the IV to allow him to eat more by mouth. His is off of oxygen and breathing room air but still has the cannula because his breathing is a bit rapid and they don't want him to overwork himself...so it's really just air flow at this point.

The ophthalmologist came to meet Oliver today to check his eyes. Another new member of team Oliver ;)  We have SOOOO many Dr.'s and specialists involved in Oliver's care, and towards the end of the week or early next week we should have almost all the test results back...we are anxious to see if we can find something to lead us towards helping Oliver feel better!

Oliver's new PICC line

Wide awake and ready for breakfast!

February 5-the day is just begining

Good morning all! Yesterday's PICC line was successful. Oliver's platelet level dropped to 5,000 yesterday evening...so he got another platelet transfusion around 10:30 and when we go in for rounds this morning we should hear the results of that count.

Oliver was visited by a bio chemical geneticist yesterday who went over our family history to look for any disorders of the major organs or blood. We were also visited by the infectious disease team to see if there is anything I may have been exposed to during pregnancy that could have been passed on to Oliver. The hematologist also came to see us-her interest was in blood disorders in our family and questions about Oliver's medical history. The team of Dr.'s working to help little Oliver is growing! Every one had lots of questions, but so far no one has had any answers. Every team involved has tests out that should be rolling in Thursday thru Monday...I hope we are close!

On another note, Oliver is eating freely now-allowed to have as much formula as he wants! Yesterday at 9:00 he ate 51ml...his biggest meal yet! He is still on formula, but at rounds yesterday we began talking about switching him back to breast milk. The GI specialist has to ok that, and he's still waiting for a test result before making that decision.

We held Oliver for hours yesterday...and it went so quickly! We are off to meet Oliver's Dr.'s for rounds and visit our sweet boy-I will keep everyone posted!

Love and blessings!!!

Tuesday, February 4, 2014

February 4-Morning rounds

Oliver is still stable and doing great. He has short periods of being quietly awake and really loves looking at Sean's face. I hate to admit it, but he seems to prefer looking at Sean...I think it's the beard-I'm trying my best to grow one too :)

My c-section recovery was supposed to include two weeks of rest. Something that has been difficult to do in this situation. Sean has been pushing me in a wheel chair as often as possible to try to keep me off my feet (thanks love!) The funny thing is, somehow the wheel chair loads him with static electricity and whenever he touches an elevator button or door handle he gets quite a zing! I feel bad for laughing, but sometimes you can even see the arc! It's quite incredible really.

We joined Oliver's medical team for rounds this morning-let's start with platelets. The nurses started taking platelet labs immediately following the transfusion. Yesterday he was at 21,000 after transfusion. When checked again in the afternoon he dropped to 7,000. Had another transfusion last night, bringing him up to 48,000 but when checked again in the wee hours of the morning he was at 5,000. He received another transfusion already this morning and at about 9:00 this morning he was at 22,000.

Last night the lines in his belly button (umbilical lines) that we have been using to feed, give meds and draw blood started to come out a bit. Lines like this usually last about a week or ten days, so this is no surprise and his Dr.'s had already been talking about removing it. There is no dressing for umbilical lines so it poses a risk of infection, and with his clotting factors being so low (platelets) if the lines were to be pulled it would be bad news...so today Oliver gets what's called a PICC line. PICC stands for peripherally inserted central catheter, it will offer long term access to the vein. The PICC nurse is doing the procedure as I write this, then they will look at the line on an ultrasound to make sure it's well placed.

Oliver's liver is still failing, and we still don't know why. We met the liver specialist yesterday and he is waiting for test results to continue ruling things out...they are looking at infectious and biochemical reasons for Oliver's condition. The hematologist and a bio-chemical genetics specialist will be joining the list of people coming to see Oliver today. He is very popular around here.

I know all of this sounds scary...and it is...but some things sound so much worse than they are. If there is anything you are wondering about please feel free to ask :)

Through all of this Oliver has not shown signs of pain at all! Something we are so thankful for. This hospital is really designed well to support families like ours and we are feeling incredibly blessed that Oliver is here, receiving the best care possible!

Oliver snuggling the heat pack on his wrist in preparation for his new PICC line.

Monday, February 3, 2014

February 3-we can't put that baby down!

Sean and I were up early this morning...The team of doctors working in our NICU unit start rounds at 8:30 every morning and we were invited to join them when they rounded on Oliver. It is something we plan to make a habit of, as we both felt very involved in his care plan and over informed as far as what's going on with him and where he's at in his healing. We sat around a big desk of computers with Oliver's nurse and 9 other doctors (respiratory specialists, hematologists, nutritionists, charge nurses, pediatric doctors and the like). His main doctor reviewed all of the information they know about him (details about his birth and every test result they have back) and each specialist reviews the information then decides what possible diagnosis they could make under their individual specialty. It was not only informative but reassuring to see how fool proof this process of elimination seems to be. In addition to the team of specialists working on his case daily, Oliver will have regular visits from the surgical team and GI specialists so they can keep current on what's happening with him...in case they are eventually needed. They decided they will not let his platelets drop below 20,000. His last count was 21,000 and at 4:00 they did another draw so we should have results soon. He also had an ultrasound on his brain & abdomen and a urine sample...everything came back negative (his abdomen ultrasound revealed the same enlarged spleen & liver that we have been seeing). So no new news yet as to what we think is going on in that little body of his...but I am confident we are well on our way to a diagnosis-and then a treatment!

In the midst of all this Sean and I can't stop smiling because we are holding Oliver!!! We have had him in our arms for the last 4 hours! He sleeps so well when we are holding him :) Also, the NICU here will allow healthy siblings to visit, so Kim will be bringing the kids to spend the weekend (THANK YOU KIM!!!) and they will finally get to meet their baby brother-and we miss them like crazy so it will be nice to spend some time with them :) :) :)

Thank you to everyone who has reached out to us. We appreciate all of your love and support and are so thankful we aren't going through this alone. We are trying to catch up on sleep but other than that we are keeping our heads up and enjoying showering Oliver with love. 


Oliver's incubator in the plane on the way to Seattle



Arriving in Seattle


 Snuggled safe and sound in his new incubator 

Oliver's first time in Daddy's arms

Oliver and Mommy

Showing off his big guns!