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 ;)
Saturday, February 8, 2014
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!!! ;)
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
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 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!!!
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!
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.
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!
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