Making Progress!

We're still down in the PICU in critical condition but Eli is much more stable than a couple days ago and making some good progress!  First things first: As a reminder, his ANC needs to be 500 for two days in a row to be considered engrafted.  Yesterday he was 400 and this morning he was 1200!  We couldn't believe he made such a big jump.  There's a good chance his numbers will drop a bit because he's currently on a medicine called Neupogen that boosts his white count so they will probably stop that tomorrow and then his ANC will likely drop by half but we don't expect him to drop all the way below 500 tomorrow so most likely (fingers crossed!) his ANC will still be above 500 and then they would considered him engrafted today, day 20!  They told us before transplant it would likely happen between days 25 and 28 so he is doing great.  Good job, little dude!

As his counts have gone up, he has continued to oxygenate much better.  The past 24 hours we have been able to wean his numbers quite a bit on the oscillator and his lungs are looking better and better on the chest x-rays.  We're still a ways away from being on regular oxygen or even a less intense ventilator but we will definitely take the progress!  He's still not able to be off the oscillator long enough for them to do a protective brush or scope of his lungs so there's a chance we may not ever know exactly why he has been so sick but the important thing is he's getting healthier all the time.

Because he was so overloaded on fluid, they placed a drain in Eli's tummy yesterday and so far have gotten about a liter off him so that has made a huge difference on his lungs as well.  He's also starting to urinate better so everything is making his little body much happier.  At first I was hesitant to post a picture because he's looked so sick but he's starting to look much better so I thought I'd share a few:

Up in ICS the most pumps Eli had at one time was 4.  With the front and back combined, he now has a total of 16 pumps.  Poor little guy is getting anything and everything right now!

Typical activity while in the ICU because there's not much else to do!

Being in the ICU is definitely a roller coaster ride that has its ups and downs but we feel so happy and blessed with the progress that Eli is making.  We sure are witnessing a miracle!  

PICU Update

I've said this before, but now that our situation has changed in the last 24 hours I can definitely say it again: It's so easy to take the little things for granted.  When we first got to the hospital a couple months ago I remember thinking that I missed being able to do the small things at home with Eli like put him in his own crib, hold him without tubes and cords all over the place or look at his cute face without the oxygen.  Right now I would give anything to do those things!  It's definitely tough living in a hospital but at least for the past 2 months Logan and I have been able to take care of Eli and do most things for him.  Right now we can't do anything but look at him and hope he feels us there with him and knows how much we love him.

We still don't know everything but we know more than yesterday.  Eli is in critical condition in the ICU due to respiratory failure and he has also tested positive for the Rhino Virus.  In an adult it's typically a simple cold but in a baby with no immune system it's much more serious.  As I mentioned yesterday, there are a number of other things that could be wrong but we still can't test for most of them.  It's possible he has a collapsed lung, has pneumonia (or some other virus or bacteria), his CMV could be getting worse and it's also very likely that he's this sick as a result of his body trying to engraft.  It's a tough situation because we obviously don't want him to be sick but we really want/need him to engraft so hopefully his body will continue to do that so his new white cells can help fight whatever is going on inside.  Eli's team would love to do a scope of his lungs because it would likely tell them exactly what's going on but in order to do a scope he would have to be off the ventilator for at least 30 seconds and right now he desatts when they do something as simple as change his diaper so rather than do the scope, they have him on a number of antibiotics to treat him for many different things since they don't know exactly what it is. As his lungs get stronger, they may try doing the scope but there's also a chance he'll just need time to heal and we might not find out exactly what's causing all of this.

We were talking to Eli's team last night and telling them how it was so weird that he seemed to be doing pretty good yesterday morning and then in a matter of just a couple hours have complete respiratory failure and be so sick and they told us that babies are very resilient and will fight super hard for a long time and then they just hit a wall and shut down in a way so you're not given much warning.  There's no denying that everything happens exactly when and how it should because they got him down here to the ICU pretty quick and from the time we left our room to the time they got him down here his throat had almost completely closed so it was quite difficult for them to get the breathing tube in and took a couple doctors several attempts.  Logan and I probably should have left the room while they intubated him because it didn't do us any good to see his satts drop all the way down below 20 before they were finally able to get everything under control.  As soon as he was stable with the ventilator, an arterial line was placed in his wrist to allow them more access for meds as well as a more accurate blood pressure and later last night he had to have another central line placed in his femoral artery. They started around 7:30 or a little before and were thinking it would only take about 45 minutes but they didn't finish until 10:30 with just a short break in there.  He doesn't have great blood flow to his legs right now so it was tough finding the vein but it was successfully placed in the end.  On top of his original central line, new central line and art line he also now has a peripheral IV because they need a lot more access due to all of the meds he's on.

There's only room for one parent to sleep in the PICU so I slept in here last night and Logan was able to sleep upstairs in our regular room so it was really nice to have him here close by.  There's no way I could do this without him!  Despite everything that is going on, Logan and I can't deny the peace we feel about Eli's health.  He is in a tough place right now and at times it's almost unbearable to watch your baby go through something like this but we know this is just another bridge we have to cross to get him entirely healthy.  It's wonderful knowing he couldn't be in a better hospital that is more equipped to take care of him.  We are so grateful the nurses and doctors are able to give Eli medicine to make him sleep and essentially feel paralyzed so he doesn't experience any pain.  It's a wonderful thought for me to think that the next time he wakes up he will feel a ton better and won't know what has been going on.  Last, but definitely not least, if it wasn't for the countless prayers and power of the priesthood I know I definitely wouldn't feel as comforted as I do.  Thanks to the support of so many, our little fighter is going to make it through this!

Fight on, Eli!

(Ps...I probably won't post any pictures for awhile because he's not exactly in the most picturesque state.)

(Pss...Another thing Logan and I will never take for granted ever again: How wonderful the ICS unit it!  Don't get me wrong, this whole hospital is incredible but the ICS unit feels like home.  We miss everyone from the cleaning crew to the techs to the nurses and doctors so much!  Hopefully we can get back up there soon!)

PICU

It's amazing how fast things can change. We received the exciting news this morning that Eli's ANC is up to 300. He is considered engrafted when it stays at 500 for two days. Almost there!

Unfortunately this morning he started de-satting while on quite a bit of oxygen. In less than an hour he went from needing 2 liters of oxygen to not even being able to stay up with 7. He was quickly moved to the ICU where they were able to get him on an oscillator and stable within a fairly short time. 

There are a few different things that could be causing his lungs not to work but we won't know until tomorrow at the earliest. 

Logan and I are so grateful for all of your prayers and support--we couldn't do it without each and every one of you.

~3 Months~

It's hard to believe another month has passed!  Next week we will have been in the hospital for 2 months.  At times it feels like we've been here for less than that and that time is flying and other times it feels like we've been here our entire lives.  A couple weeks ago we officially passed the point where we've lived here at the hospital longer than at home (with Eli) so in a lot of ways home doesn't really feel like home either, it's quite strange.  We really are so proud of how strong Eli has been and can't wait to settle back in to somewhat regular lives in the (hopefully) near future!

Our little peanut is officially 3 months old today!  He is getting stronger all the time and amazes us every day with what an amazing little guy he truly is!  Here are some things about Eli:

-Finally moved to size one diapers a little bit ago.  We went through a phase where newborn diapers were too small and he kept blowing out of them but size 1 diapers were too big so he kept peeing out of them all over his clothes.  Luckily that didn't last too long!

-Even though he gets weighed every morning, it's tough to know what his real weight is right now because he is holding on to so much fluid so a lot of it is water weight.  It's common for bone marrow kids to get pretty puffy and Eli has definitely hit that point!  If I had to guess, I'd say his "real" weight is about 11 pounds so he's growing pretty well still!

-Most newborn clothes are too small now but the 0-3 and 3 month clothes are a bit big so he wears a little bit of those three sizes.  

-Because of Eli's health issues and all of the medications he's on, there's a good chance his growth will slow down quite a bit (height and weight) and his milestones and motor skills will also likely be delayed for awhile until we can get him off of his immunosuppressants, which probably won't happen for a another year or so.  Despite all of this, we can tell he's getting stronger every day and is now quite the champ at holding his head up so that's big for him!

-Before Eli got sick from the chemo, he was starting to become a much better sleeper!  For awhile he was waking up to eat like every hour and a half but then he got into this habit of sleeping for five hours, waking up to eat, and then sleeping for another three.  It was glorious!

Here's our puffy little stud muffin at 3 months:

The biggest news we have is that our little dude can finally hear!  He got his hearing aids two days ago and it was such a neat experience for us.  We have the most adorable video I want to post of his reaction when they turned the hearing aids on for the first time but it needs to be converted to a different type of file so until then, here's a sneak peak of what it was like for him: 

He was quite alarmed with the whole thing!

It's kinda hard to see but the ear mold is camo since he's been such a fighter!
In case you're wondering, he was born with hairy ears and it still hasn't fallen off yet :)

The hearing aids are quite powerful so he can hear environmental sounds and even get a lot of speech and language now.  They are programmed to slowly increase the strength over the course of two weeks so he doesn't get too overwhelmed all at once so in a couple weeks they'll be full strength.  Our initial thoughts were that Eli would hear us talking to him and immediately respond to what he was hearing but then we realized that even a newborn with normal hearing doesn't respond to sound right away even though they hear it so it will probably take a couple months before he'll actually react to the things he's hearing.  Logan and I are so happy he has been given this ability to hear, even if it isn't complete hearing. We are so grateful for the technology that makes this possible and are so excited for Eli to experience this new part of his world!

Health Update:

Our poor little dude has some pretty brutal mucositis.  We were forewarned this would happen but it still doesn't make it any easier to see him deal with it.  He has completely given up on eating and is getting everything he needs through IV nutrition.  The worst part about this is he still really wants to eat so at least once a day he'll try eating and want the bottle so bad but after he swallows a couple times he bursts into tears :( It's even difficult for him to take a binky because then he has to swallow occasionally which is too painful so he doesn't let himself take one now.  As soon as his counts go up the mucositis should go away pretty quick so fingers crossed that happens sooner rather than later!  In order to to keep the pain under control, he gets meds that make him pretty exhausted so that combined with his body trying to heal itself is a recipe for one super tired baby!  We don't see the whites of his eyes a whole lot but when we do we sure love it :)

PCMC Shoutout:
I'm sure I've said this before, but it can't be said enough...the staff here at Primary Children's, specifically the ICS unit, has been absolutely incredible.  Everyone from the cleaning crew, to the techs, to the nurses, to the doctors have been amazing.  Obviously we wish our circumstances were different and we didn't have to be here at all but we definitely wouldn't want to be anywhere else given Eli's situation.  As hard as it is to believe, we truly do feel at home (as much as that's possible) because of how well not only Eli but Logan and I are taken care of.  This is just another wonderful blessing we've been given the past couple months!

Fight on, little Eli!

~Eli's First Easter~

The Easter Bunny visited us last night!  As it should be, Eli was spoiled!  Between me and Logan and the hospital he got 3 baskets filled with all sorts of fun stuff.  We had a great morning together and almost felt like we were at home together :) Here's our little stud muffin in his Easter outfit:

  After checking out what the bunny brought, Eli had a little egg hunt with daddy :)

It's kinda hard to see but there's an egg down by his right hand

Logan and I were able to go to the sacrament meeting here at the hospital which was great like always but especially today given the nature of the holiday.  Later on in the evening we dyed eggs together and had lots of fun :) **TIP: Unless you want colorfully painted lips, I suggest you don't stick an egg with wet dye in your mouth!**

Eli Update:

Our little fighter has been such a champ and is doing so well considering all things.  He has continued to eat really well on his own which has pleased his doctors quite a bit.  Unfortunately he's starting to develop mucositis which is a side effect of the chemo.  It typically starts in the tummy and then sores often develop throughout the throat and mouth.  Some cases are worse than others so we are hoping his stays more mild.  Eli has always been a great eater and still has the desire to eat but every time he swallows he just starts crying and can't finish :( He will likely start IV nutrition tomorrow to give his tummy and entire GI tract a break until he can handle eating on his own.  We're hoping he doesn't have to be on the IV nutrition for too long because sometimes it can be difficult getting kids to eat again when they haven't had to for so long.  

Aside from the mucositis, Eli is such a happy baby.  He's sleeping well and handling everything else great.  Today is day +6 and his numbers are all still zero which is expected.  The waiting game continues until he engrafts!

We hope everyone had a wonderful Easter!

Fight on, little Eli!

~A Second Chance at Life~

It's official!!  Our little fighter is now on the road to recovery after receiving a bone marrow transplant today!!  We have had a great day filled with fun and excitement as we watched our beautiful baby boy receive a second chance at life.  I woke up feeling like it was Christmas I was so excited :) Everything went according to plan and basically as well as possible.

Our day started with a hospital photographer coming in and taking pictures of Eli.  She was going around the hospital taking pictures of some of the patients and asked if she could take a few of Eli.  We were happy to have him participate!  He was sound asleep but I think they turned out pretty cute.  Around 12:30 Eli's party started!  A bunch of the staff came in to sing, give Eli some gifts and wish him well!

The two toys are from me and Logan (he won't be able to use them for a few months) and the darling blanket, stuffed elephant, teething toys and BMT t-shirt are from the staff :)

Anyone that wants to participate guesses what day they think Eli is going to engraft (when his counts get to a certain point and they know the marrow is making itself at home) and puts their name on that day and a dollar in the envelope.  The winner gets the glory and Eli gets the money :)

 Right after our little party, they quickly got the transfusion started!  Most people think (and we did too before we got involved in the whole process) that a bone marrow transplant is something that happens in surgery but it's actually quite the opposite and very "anticlimatic".  It happens in the room, right at his bedside and it is just put right into his central line.  Eli slept through almost the entire thing which only lasted about 45 minutes.  His blood pressure spiked pretty quick so they gave him some fast acting blood pressure medicine and that did the trick!

He woke up towards the end and was a pretty good boy while everything finished up: 

I waited all day for Eli to wake up enough so I could take some pictures of him but he is getting so many meds that make him sleepy so he has basically been zonked out all day.  I attempted a few and this is what we got:

The real waiting game begins now!  We no longer have to wait to find Eli's typing or find him a match or wait for the transplant to happen.  All we have to do now is wait for the new marrow to find its way into his body and make itself at home.  We will be able to go home when his ANC (absolute neutrophil count) gets to 500 and stays there for at least two days in a row.  500 is still WAY below a healthy persons number but that's when they start preparing us for discharge.  The average day of engraftment is 25-28 days so it will likely be at least a few weeks.  Our main goal continues to be to keep him healthy since his counts are lower than ever because of the chemo and hopefully keep him as comfortable as possible.

Logan and I can't say enough how proud we are of our little Eli and how grateful we are to each and every one of you.  We couldn't be where we are today without all of the incredible support we have received each and every day!

Fight on, Eli!

A Day of Rest

The day we've been looking forward to for what seems like forever finally came yesterday!  Eli finished his last dose of chemo late last night (technically early this morning) and you can bet we celebrated!  We are so proud of how well he handled everything and so grateful for the strength he was blessed with to do so.  Looking back over the past 8 days, we'd probably sum it up as being pretty smooth sailing the first 4 days and pretty rough the last 4.  Logan and I can definitely agree on one thing: We have learned so much from our 2 1/2 month old on what it truly means to be strong during the trials we're given.  Thank you, Eli, for fighting so hard and teaching your mommy and daddy so much!

We were so excited when the time remaining hit all those zeros!

It seems like once the chemo is finished, the side effects should subside as well but unfortunately that's not the case.  Some of the side effects that can be pretty brutal don't actually start showing up until several days after the last dose of chemo.  Today is technically supposed to be Eli's rest day but his tummy is starting to reject anything that goes into it.  The doctors expected him to stop eating after a couple days but he has continued to pleasantly surprise them with how well he is eating.  He has still wanted to eat all day and has eaten really well when we've fed him but right after he finishes it all comes back up.  We've been trying different anti-nausea meds in an attempt to calm his little tummy but if that doesn't work they will probably put him on TPN for awhile which is nutrients through his IV so his stomach can have a break.  Fingers crossed we're able to keep him eating!  Several people have asked why his hair hasn't fallen out yet and the nurses say that it typically takes a couple weeks but they also mentioned they've seen babies that never lost their hair.  Eli has already lost a lot of it but maybe he'll luck out and keep a bit! 

Tomorrow is the real big day we have been anxiously awaiting!  It's pretty crazy to think that because of the advanced medical technology available to us, out sweet little boy is going to have a second chance at life.  We are so grateful for the care that has brought us to this point and know he is going to be in very qualified and guided hands tomorrow and throughout the rest of his recovery.  Eli's transplant is currently scheduled for 12:30 (we all know that can change pretty easily) but he'll have his bone marrow birthday party before then :) We are so excited to get our little boy on the road to recovery!

Logan and I know that Eli has done so well with everything and received so many  blessings over the last 6 weeks because of the numerous amounts of prayers, thoughts, love and well wishes that have been sent our way.  We also know that he will do that much better tomorrow because of all of your support.  Thank you so much for helping our family get through this journey!

Our sweet little boy was able to go off oxygen today!  It's not uncommon for him to do well for awhile and then to need it again but hopefully he can get a good break from it.