Thursday, February 28, 2013

Home Sweet Home

When we were initially told our stay here in the hospital would be 4-6 months I was quite shocked.  It's hard to imagine living away from home for that long, especially when your little family can't be together all the time.  They brought us to our cozy room and my first thought was: "I have to make this place feel more homey asap.  I can't possibly live in a plain hospital room with a jail cell-like-crib for that long."  A few cousins drew Eli some pictures, we brought in a few pictures of our little guy and some children's books and switched out my hospital bedding for some of our own blankets and things started to feel better right away :) It's not much, but it feels much more like home than before!

I can't remember if I already mentioned it in a previous post but only one parent is allowed to spend the night regularly but they will make special accommodations if something is going on.  The night before Eli's procedure last week Logan stayed over and it was quite horrible because Eli was upset (because he was starving) and both Logan and I were trying to sleep on that tiny bed.  For me, it's a little easier saying goodbye to Logan each night now because I know he's going home to get much better rest than he would here and I'm able to sleep more soundly as well.

The past 48ish hours have been rough for our sweet little boy.  His central line was placed Saturday and by Monday it was already infected.  Because he has no immune system they have to be very careful with him getting any infections at all.  They started him on a pretty strong antibiotic but after 24 hours it still hadn't gotten any better.  On Tuesday evening they had to remove the central line (fortunately this was just done at his bedside while he was awake) and place a regular peripheral IV.  Not only was I super bummed out that he had an infection, I was just as discouraged that he would have to go under sedation again to replace the central line at some point.  On Wednesday morning his IV went bad so they had to replace it and on Wednesday evening that IV went bad too so they had to replace it again.  This morning when they were running his antibiotic I went to change his diaper and noticed his foot was wet so I looked at the IV and saw that it was leaking and his ankle was pretty puffy.  I called the nurse right away because the antibiotic he's on is quite strong and can do damage to the skin and tissue if it gets in there at all.  They stopped the antibiotic and removed the IV and of course had to come place a new one, 4th in the last two days, so they could finish the antibiotic.  After they finished placing the IV they had to give him 5 shots in his foot in order to prevent the antibiotic from spreading :( Thank goodness Logan has had the last two days off work because it allows me to leave the room when these awful things happen and he can stay and comfort our little guy.  While I've known from the beginning that there will be good days and tough days, it still doesn't make the tough days any easier.  When he's going through a lot and seems so sad I have to remind myself that he really has been doing so well and most days are really good.  A few days ago was one of those happy days:

Because he's had so many failed IVs, they worry about the risk of infection increasing because they have to continue placing a new one so often.  They can't replace the central line yet because his little chest is still infected so they decided to find something in the middle so tomorrow they will place a picc line in his arm.  From what I understand, a picc line is pretty similar to a central line but it's not quite as permanent so he will still have to have the central line put in before his treatments.  One thing I'm definitely not looking forward to with him getting the picc line tomorrow is the sedation because the sedation means he can't eat again :S.  We got some good news regarding that, however!  I'm not sure why in the world they made him go so long without food the first time because they just told us he needs to stop eating six hours before the surgery but he can have Pedialyte up until 2 hours before.  Hallelujah!  We can definitely do 2 hours way better than half the day like last time.  Tonight might not be so bad after all!

More News:

The doctors make their rounds every morning so they can come check on Eli and see how he's doing and also give us any news they might have.  They told us to plan on this week being pretty quiet with not much to report since we're still a week to two weeks away from finding out what his bone marrow typing is so we were pretty surprised when they came in this morning with two bits of news.  News #1: They finally discovered what his rash is from!  It has been the biggest mystery to everyone from me and Logan all the way up to every specialist here at the hospital.  They've been getting blood from me periodically so they can see if I passed any viruses to Eli during pregnancy and it turns out I actually passed some of my cells to him.  Even though he doesn't have much of an immune system he still has a bit of one so when my cells finally settled down into his body they basically started fighting with his cells and that's why he broke out in this wicked rash.  I wish I had taken a picture of his whole body but things were crazy at that time so I totally forgot.  You can get a pretty good idea what it looked like from this picture:

Every inch of his tiny body was covered like this :( Fortunately it's nowhere near this bad now as you can see in the picture above)
The doctors said only 5% of my cells are in his body so not too many.  Once he has his chemo it will get rid of his cells and my cells so he will be fine after that and they'll just keep a close eye on him until then.

News #2: Eli's bone marrow typing came back today!  They originally told us to plan on 2-3 weeks and it has only been a week and 2 days :).  Unfortunately the database they throw his typing into to determine which type of match he needs is down for maintenance but they are hopeful it will be up and running by Monday and then we will have a better idea how long they think it will take to find a donor depending on how rare or common his typing is.  When I mentioned to his doctors that the typing came back a lot quicker than they expected he said they put a rush on it and asked them to get it back as soon as possible.  Thank goodness for the amazing staff here at PCMC! (Although Logan and I know the real reason it came back so fast is because of everyone's prayers on our behalf so thank you, thank you!)

As they were leaving, his medical team said they are very pleased with how well he is thriving and gaining weight since he's been here and told me and Logan to continue doing whatever we're doing because it's working.  That was music to our ears and so comforting to hear!


Logan and I are completely amazed and humbled at the amount of support we have received since Eli came to the hospital.  I don't think any of you realize how much your prayers, thoughts, comments, and offers for help truly do bring us comfort and strength to get through each day.  It is so reassuring to know that we have so many people there for us that are cheering our little guy on and praying for him so hard.  If we aren't able to respond to every comment, phone call, text or message right away please know that we cherish each one of them and can't thank you all enough.  If there is ever a way to repay each one of you for all of your love and concern we absolutely will.  THANK YOU!

A peek into the life of our little man:
Eli LOVES the bath!
(The water has to be quite warm or he has a fit!)

Checkin' himself out...little man knows he's a stud!
Not lovin' this tummy time business

Trying SOO hard to hold his head up! Haha

Saturday, February 23, 2013

Fight On

Yesterday was a big day for our little champ.  Eli needed to have 3 procedures done under sedation so rather than putting him under 3 different times they coordinated all three tests so he'd only have to be sedated one time.  The evening before, the doctor came in to tell us what to expect and then finished by saying that he was scheduled for 10:00am and that he couldn't eat anything after midnight.  Umm...what?  Eli is nowhere close to sleeping through the night and still eats every 2-2.5 hours!  I was immediately dreading the night.  How in the world are you supposed to make a baby go so long without eating?  My heart was already breaking for him and the night hadn't even started! I was able to get him to finish a feeding right at midnight and then fortunately they allowed him to have unflavored Pedialyte until 5:00am.  I was hopeful that he would get a lot of sleep from 12:00-5:00 but unfortunately he got almost zero.  The nurses were in and out constantly so Eli, Logan or I didn't get much sleep at all.  They drew his blood twice, took a chest x-ray, checked his vitals and and checked his IV constantly throughout the night so he was not a happy camper.  I finally got him to fall asleep a little after 5:00 and was hoping he would sleep for close to 3 hours because then there would only be an hour and a half of crying until they came and got him around 9:30.  He had other ideas and woke up a couple minutes after 6:00 ready to eat.  He didn't mind the Pedialyte but there's not much to it so I'm sure it went right through his system.  I braced for the worst and try to do everything I could to comfort him starting at 6:00 and just hoped the next 3.5 hours went by fast.  Around 9:30 when they were supposed to come get him the nurse came in and said they were running behind and they would come for him at 10:15ish.  Fantastic.  At 10:15 she came in again and said they would come at noon because they were still behind.  At this point he will have gone 12 hours without really having much to eat.  I felt so horrible for him!  12:00 came and once again, we were informed they were behind and they were hoping to get him by 12:45.  I honestly thought my poor, tiny baby would starve to death! (Not really) Finally we got some good news and at 12:15 they were on their way up.  It was no doubt the longest 12 hours I can remember in a long time!

The first thing they had to do was put in a central line.  For those of you that don't know what it is, because I sure didn't before we got here, it's basically an IV that goes in his chest and straight to his heart--the thought of that still freaks me out.  It's much more long term than an IV (it will stay in the entire time we're here) and not only can they give him fluids or medication with it but they can also draw blood from it.  This will be so nice to have because since we've been here they've had to poke him constantly, sometimes multiple times a day, and I feel horrible every time they do.  The central line placement was successful and it is working great.

The second thing they did was an echocardiogram and that too was successful.  It is a standard procedure they do for all of their bone marrow patients to ensure the heart is functioning properly before they go through chemo and the transplant.  Everything with his heart looked fantastic so that made us very happy.

The third and final thing they had to do was an in depth hearing test.  This is also a standard procedure they do before the transplant because they want to make sure their hearing isn't damaged during the treatment but our situation also happened to be a little different.  When Eli was born he didn't pass his newborn hearing screening and at the time they told us they thought it was because he still had fluid in his ears.  We didn't think too much of it and scheduled a more in depth test a little down the road.  After Eli was diagnosed with SCID, they were trying to determine which type of SCID he has and discovered that he showed many of the signs of the type of SCID called Reticular Dysgenesis.  One of the common sings of this type of SCID is hearing loss.  When the doctors told us that last week we were a little worried because we (at least I) was hoping the newborn hearing screening was inaccurate.  Looking back, I'm glad they told us it was a possibility he'd have hearing loss because we were more prepared for what the audiologist had to tell us.  

On top of everything else our little guy is already dealing with, they discovered yesterday that he also has profound hearing loss in both ears.  They said that there is possibly some fluid in his ears still and when this is gone there's a chance his hearing could improve some but that he will definitely have permanent hearing loss.  If you had told me before Eli was born that he was going to have hearing loss I probably would have been heart broken.  Surprisingly, when the audiologist told us the news both Logan and I were quite calm and comforted.  We already felt like we were blessed with a pretty amazing little spirit and this just confirmed that for us.  We have no doubts that he will grow up to be a pretty strong little guy for all he is going to overcome.

The steps we now have to take as far as his hearing intervention goes are still quite unclear.  For one, they need to find out if his hearing will improve at all once the fluid (if there is any) is gone.  Typically they would put tubes in his ears to help get rid of the fluid but because there is a risk of infection with tubes and he has no immune system his doctor doesn't want them in right now.  The audiology staff is going to meet with Eli's medical team next week to determine a plan of action so we'll know more then.  Until then, we are loving our little boy just the same and are so grateful he's ours.  What a unique, special journey we have ahead of us as a family.

As Logan and I have continued to process everything that's taken place since Eli was diagnosed almost a week ago, I had another Dr. Seuss story come to mind.  (Pardon my constant reference to children's stories.  I guess that's what a teaching degree will do to you and I love the messages they teach.) This particular story is called Horton Hatches the Egg.  For those of you not familiar with this one, it is about a bird named Mayzie that convinces Horton to sit on her egg while she takes a short break that ends up lasting for months.  Even though Horton looks completely ridiculous sitting on Mayzie's egg and is constantly made fun of, he never leaves the egg and continues to say to everyone: "I meant what I said and I said what I meant, and an elephant's faithful, 100%!"

After 51 weeks of sitting faithfully on Mayzie’s egg, the selfish bird suddenly returns and demands the egg that she as abandoned.  But it’s mine!  Screamed the bird, when she heard the egg crack.  The work was all done.  Now she wanted it back.  It’s my egg!  She sputtered.  “You stole it from me!”  Get off of my nest and get out of my tree!” Poor Horton back down with a sad, heavy heart.  But at that very instant, the egg burst apart!  And out of the pieces of red and white shell, from the egg that he’d sat on so long and so well, Horton the Elephant saw something whizz!  It had ears and a tail and a trunk just like his!  And the people came shouting, “What’s all this about….?”  They looked and they stared with their eyes popping out!  Then they cheered and they cheered and they cheered more and more.  They’d never seen anything like it before.  My goodness!  My gracious!  They shouted.  My word!  It’s something brand new!  It’s an elephant bird and it should be, it should be, it should be like that!  Because Horton was faithful.  He sat and he sat.  He meant what he said and he said what he meant.  And they sent him home happy 100%.

This will no doubt be the most difficult thing Logan or I has ever had to go through but we both know that we can leave this trial behind and go home 100% happy if we stay faithful and grateful for the blessings we continue to receive each day.

Next post I'll make things a little bit more exciting and add some pictures of our new humble abode :)

Tuesday, February 19, 2013

Did I Ever Tell You How Lucky You Are?

When I was quite young
and quite small for my size,
I met an old man in the Desert of Drize.
And he sang me a song I will never forget.
At least, well, I haven't forgotten it yet.

He sat in a terribly prickly place.
But he sang with a sunny sweet smile on his face:

When you think things are bad,
when you feel sour and blue,
when you start to get mad...
you should do what I do!

Just tell yourself, Duckie, 
you're really quite lucky!
Some people are much more...
Oh, ever so much more...
Oh, muchly much-much more
Unlucky than you!

About a week ago I woke up and saw a few red dots on Eli's face but didn't think too much of it.  I figured it was probably baby acne or that maybe he had scratched himself during the night.  By the next day the dots had spread to his neck and were starting to show up on his little body so I called and spoke to the triage nurse at our pediatrician's office.  I explained to her what was going on and she said it sounded like he was just getting baby acne and that he should be just fine.  About 2 days later the rash hadn't gotten any better and was spreading and Logan happened to have the day off so we decided to take him to the doctor just to make sure everything was okay.  Long story short...Eli was admitted to Primary Children's Hospital a few hours later because they weren't sure what was causing his rash and when they did some blood work they discovered he had very low white blood cells.  We've spent the past several days at the hospital as the doctors ran tests to determine which virus might be causing the rash and the low white blood count.  We were hopeful that even if they couldn't figure out what virus he had, it would at least run its course and we would be discharged within a few days or maybe a week.  You can imagine our shock, then, when the doctors came in our room on Sunday morning and told us that Eli has SCID.

Severe Combined Immune Deficiency or SCID is a rare genetic disorder in which affected children have no resistance to disease.  Basically Eli was born with a very poor immune system which means he doesn't have the ability to fight off any kind of bug.  The only way to cure SCID is for our tiny little guy to have chemotherapy and a bone marrow transplant.  I've had quite a tough time wrapping my mind around the thought that our perfect little baby will have to go through something so difficult.  As expected, Logan has been an absolute rock and brings strength to our little family only a daddy can bring.  I know we will make it through this because we have him at the head of our family.

Long and Short-Term Outlook:

Because we just barely received this diagnosis we are still gathering and trying to understand the enormous amount of information there is for us to know.  However, we have a pretty good idea of what our basic timeline is.  Eli's blood was just sent to a special lab out of state that will determine his bone marrow typing and tell us what kind of match we are looking for.  It will take about 2-3 weeks for us to receive the results of this test.  Once we receive his typing, it will take roughly another 2-3 weeks for them to find the best match possible.  The best matches are typically found in siblings but because Eli is our first baby they will look elsewhere.  Once a donor is found, he will undergo a form of chemotherapy to wipe out the little immune system he has.  This is necessary so his current (although weak) immune system won't attack the new one he will be receiving.  We're not exactly sure how long this will take but I assume a few weeks as well. The next step will be the actual bone marrow transplant.  The transplant will take a few hours and then the recovery will begin.  The estimated recovery after the transplant is about 2-3 months.  Overall, the doctors have told us that our stay here in the hospital will be roughly 4-6 months.  Hearing this news was definitely tough for me at first because it means an entirely new lifestyle for a while.  Some people have asked why we can't go home until his transplant and the answer is because Eli basically has no immune system so it is way too dangerous for him to be outside of the hospital.  He is currently on a unit that is very clean because it is made up only of kids with health issues like Eli's or cancer and things that they can't spread to one another.  Eli is also in isolation so we aren't able to have any visitors for fear he might catch something before his transplant and not be able to fight it.  I will basically live here at the hospital and try to make Eli's life as normal as possible over the next 6 months and every moment Logan isn't at work he will be here with us in our new little home.  Despite being away from our regular home, as long as we have each other I know we will be perfectly happy together.

Long-term, Eli's prognosis is very good.  The success rate of his bone marrow transplant is very high (about 90%) and the doctors expect him to make a complete and full recovery.  Although it will take some time, once the recovery process is complete Eli should be completely cured and be able to live a normal lifestyle.

Counting Our Blessings:

Although we now find ourselves in less than ideal circumstances, Logan and I can't help but be incredibly grateful for the blessings and tender mercies that have lead us to where we are now.  The majority of children with SCID don't catch the disease until much later than we have because it typically takes a while for the child to start getting sick and not get better until their parents realize something is wrong.  Eli has seemed perfectly healthy to me and Logan so had it not been for the rash he developed that prompted us to take him in, we may not have found this until much later when he was much more sick.  The doctors hear at PCMC have told us that this is the earliest they have ever treated a baby with SCID.  One of the great advantages of catching it now is the fact that Eli will go into his treatment healthy (assuming he doesn't catch anything in the next couple months) rather than very sick like many children.  They are confident that his good health will be a great benefit during his recovery.

As news has started to spread about Eli's condition, Logan and I have been completely humbled by the amount of love and support we have received from our family, friends and ward family.  The prayers and well wishes that have been sent our way have been a greater help than you can imagine.  It brings great comfort knowing we have so many people keeping us in their thoughts and cheering our little Eli on so thank you from the bottom of our hearts!

While we wish our sweet boy didn't have to go through this trial so early in life, we also know that things could be much worse.  We feel very blessed that the chances of a complete recovery are so high and that he is being taken care of at the best hospital he could possibly be at.  Although there will be days that are tougher than others, we will continue to be eternally grateful that we were blessed with this amazing spirit in our lives.

That's why I say, "Duckie!
Don't grumble!  Don't stew!
Some critters are much-much, 
oh, ever so much-much, 
so muchly much-much more unlucky than you!"

Friday, February 8, 2013

~Backtracking 3.5 Weeks~

My most recent post was about Eli turning one month old but I have to back track a few weeks in order to show off his adorable newborn self.  My wonderful friend Kortney took Eli's newborn pictures for us and they turned out perfect!!  She did an amazing job, my friends, so let me know if you need a fantastic photographer.  Here are some of my favorites:

I have had so much fun looking at all of these pictures but can't believe how much our little guy has changed in the short time since these were taken!  I'm so happy we were able to capture Eli in his tiny preemie days and can't wait to continue watching him grow! Thanks again, Kort!

Tuesday, February 5, 2013

~One Month~

One thing you constantly hear people say about life with a baby is how fast time goes and how much they wish it would slow down just a bit.  I always believed them but never knew it could be so true!  It really is hard for me to believe we've already had 1 incredible month with our sweet little Eli.  One month of pregnancy felt like 7 years so it's amazing how fast the past month has gone!  Logan and I couldn't have asked for a more wonderful first month of parenthood and have had so much fun getting to know our little guy.  Eli is developing the cutest personality and is constantly making us laugh and wonder how we got so lucky to be his parents.  Happy 1 Month Birthday, baby boy!!

It took our little guy about 3 weeks to get back to his birth weight and he has since passed that and is on the fast track to becoming a chunk :) (We hope!) Many people keep telling me not to wish away how tiny he is because it will be gone so fast and I know they're right but I have to admit I'll be a little less stressed when he's not quite so fragile.  If I can help it I would love to not have another baby in the middle of the winter.  This flu season/inversion/freezing weather makes me a nervous wreck!  I can't wait until it's warm enough for us to go outside and take a walk.  Until then we'll continue to stay cooped up in our little home :).

It took a little bit of time but Eli is now a nursing champ!  There were moments I was worried we wouldn't get the hang of it but fortunately he did and that has definitely made for a happy mommy and baby!  Now that he's not quite as tiny he's also getting on a pretty good night schedule.  The past little while he's only woken up 2 times during the night and goes to sleep right after so I'm lovin that for sure.  We originally planned to have him sleep in a bassinet in our room for a while but the first night home from the hospital he did not do very well at all so we moved him out of our room and into his crib and it worked like magic!  At first I thought I would have a hard time not having him right by me but it has actually been really nice because we can't hear every little noise he makes but I  wake up as soon as he let's me know it's time to eat and down the road we won't have to make the transition to a crib so that will be nice.  I think Logan also gets a little bit better sleep with him out of our room so that makes me happy too.  We are quickly learning what this little guy likes and dislikes and one thing he has made us aware of is he will not tolerate being swaddled unless I leave his arms out.  He gets furious if I wrap his arms up and won't stop crying until I take them out.  If I manage to swaddle his arms because he's sleeping then by the time we go get him when he wakes up he's somehow managed to get them out anyway so I gave up and just make sure he has on long sleeves and a hat so he doesn't get too cold.  I'm anxious to find out what else he's going to demand out of us! ;)

I'm pretty sure my favorite thing ever is watching Logan play with Eli when he gets home from school or work.  It's easy to see how much fun he has when Logan plays with him.  Eli's eyes get huge and he watches his daddy wherever he goes.  He's definitely a daddy's boy in every way!  Eli looks just like Logan and I wouldn't want it any other way :) We sure are loving life and can't wait to see what month 2 brings!

Ps...Unfortunately these poop explosions all over the couch have happened more than once!
Thank goodness for the awesome upholstery cleaner we  discovered!