Twinkle twinkle. Eli's little star!

A friend posted a blog about dedicating a star to her boyfriend and adorable daughter. This inspired me to do the same for Eli. She's got the best ideas :) Thanks Alissa! 

As we all continue to pray for this little boy, I couldn't think of a more perfect gift! A star, just for him. So when you're ready to lie down and be with those you love tonight, look up into that amazingly gorgeous sky, and think of Eli & his journey :) 

Www.yourstarforever.com 

Setback.

Eli now has an infection called Sepsis. It's a severe blood infection that can be very fatal if not caught in time and treated right away. Fortunately, we caught his sepsis shortly after Eli's oxygen levels started go decrease. The sepsis has gotten to the right side of his heart and is slowing down his ventricular function. This is his good side of the heart. They had to reintubate Eli because while the antibiotics are trying to make him better they wanted to take the breathing work off his heart and lungs so the machine is doing it again until he's strong enough to be on his own, again. Eli now has a wound vac, ART line, central line, foley cath & ventilator back on. His levels have already started to come back up from yesterday which is really good. The doctors are satisfied with the way he is bouncing back from this infection. 

I had a hard time yesterday with Eli being put back on the ventilator. My baby boy was considered immobile once more. My 'normal' things I could do here were taken away, again. There's only so many times a mother can feel helpless in the care for her child. Everyday I feel like I am failing. I just can't do anything for him and it kills me. I can pray and I can tell him I love him. And in hopes, both of them hear me. 

Instead.

41 days in the hospital, and counting. I've had a lot of time to think over these past few weeks. A lot of time to think of how life should be going and, instead, it's going like this...

Instead of changing my own babies diaper, I'm watching a complete stranger do it. 

Instead of waking up in my own home, I'm in a volunteer housing program. 

Instead of waking up to the coos and cries of my newborn baby, I wake up to the pitter patter of the child who has cancer just getting his day started in the room above us. 

Instead of walks at the park with my sons, I walk from Ronald McDonald to Childrens, to visit Eli with Lucas. 

Instead of walking around the house to soothe my baby, I'm attached to a post with 3ft of cord I can't unplug and we have to dance in place to make him stop crying. 

Instead of watching my son on a baby monitor through the night, I watch episodes of family guy to make the night pass by until I can wake up to go see him again. 

Instead of the normal things you do as a family with a newborn, we don't do. We haven't done. It's the normal things you miss. What feels natural to you, feels abnormal to Us. Everything's different. It's a way of life you never thought you would have to experience. My highlight of the day comes from the 3 meetings the docs have about each child on the CICU floors. When they get to Eli, a little piece of me lights up, in hopes they are ready to take him to the next level. Little by little, as that conversation goes, that light dims. We remain in the CICU. How much longer? Will we leave? We can't answer any of these. 

Soon, hopefully. 

She's off.

What a day we had yesterday. Kate officially moved into IU campus. I feel like a total grandma right now. How is she already in college? How is she able to be alone for more than 24 hours with no parental supervision? How is she going to feed herself? How is she going to do her own laundry? She isn't ready. There is no way. Lets just take a moment and pray for Kate. She's gonna need all the help she can get :) HAHA! 

Just kidding. My sister is very responsible. HAHA! Just kidding again. 

No seriously. I'm very proud of her and what she will accomplish over the next 4 years! I pray it only takes her that long. I need glasses soon and I won't be going to any other eye doctor other than Katie James, optometrist. Boom. 

Here's a few pics from our lunch yesterday. I was able to sneak away from Eli for a little while and enjoy some family time. GO HOOSIERS! 

No Step Down. For now.

We had our hearts ready for moving to step down this week, but that doesn't seem like its gonna happen. I've been perfectly content taking it step by step, but in rounds tonight the vibe was off. I could tell they didn't wanna really tell me what they think will happen. 

He's having some reflux issues and his lungs are still wet. They want his bolus feeds perfect before they take him out of the CICU. They basically want him "GO HOME" ready before they send him to step down. He isn't there yet. 

The nurses tell me it's because of all the issues he has had. The blocked shunt really put a delay in Eli's recovery. He's just not ready. I'm not pushing it by any means. I want Eli at his best before they send him away from all of the care they give him here. 

But there's just a point where you break. We've been here for over a month. I'm ready to be home, dinners with my family, sleep in my own bed and wake up to my own coffee pot (that I don't have but will be purchasing soon)! I am going to be taking the month off of September with no pay to care for Eli. The time period between this stage and the next surgery are very critical. I need that time with Eli at home. Eventually. 

With the information we got tonight, taking off September doesn't seem like that will even be enough. Few more weeks in the CICU and then step down. Then home. It's just so frustrating. 

We just want to be home. The 4 of us. 

:/

Eli monthly.

Next step. STEP DOWN.

Lots of changes for eli. Once he was off the vent, things start happening very quickly. He has all of his central lines out, nasal canula and neers are gone. He still has a picc line for meds. They changed his feeds from a constant drip of breastmilk to bolus feeds every three hours. He's tolerating them really well, which is a really good sign. 

Our key to getting into the step down unit is his feeds. Which he's sailing through thus far with no issues. Rumor has it that Friday would be the day. Monday at the latest. They won't transition him to the floor over the weekend. It's just not ideal. Once he's in step down. He's gotta prove himself he can go home. Gain weight off of what they are giving him and hold his own. We're hoping discharged by Friday! 

Can you believe it! DISCHARGE is in sight too! 

Eli will have been in the hospital exactly one month tomorrow! Which is his one month birthday! Ahhhhhhh. Time seemed to be so slow but now its flying by! Before we know it, we're back here again for his Glen procedure in just a few months! :(

Extubation

And he's off the ventilator. WOOP WOOP! 

I woke up today like a little kid on Christmas morning. I have my little babyface back! It feels like eternity since I could see his lips. His full set of lips! 

I know it's about the baby steps, but this is a HUGE step. HUGE! He still has to have the nasal canula for his pneumonia. He will get his feeding tube back in tomorrow and he will begin eating breast milk again. I'm so excited. Can you tell!? 

Eli was down to 2 meds. Heparin and Milrinonine. The heparin goes away tomorrow but gets replaced with injections of lovanox. Those will continue to be given twice a day til his Glen procedure. The other med is for his pneumonia which will go away in a few days. 

We still aren't able to hold Eli. This comes soon. He still has some IVs in that are in awkward places and just makes it uncomfortable for everyone. The last thing We want to do is maneuver one of those out and poor nugget has to have it stuck back in. So we're waiting til he's all clear of needles and we get the go ahead to squeeze him like a pimple! Because you know I will. He's gonna need oxygen when I get ahold of his little booty! 

WHAT'S NEXT you ask?! 

For Eli it's tolerating being fed through his NG Tube. He has only been fed for 2 days out of his nearly month of life. He has gotten nutrients through IV but it was at a slow pace and then taken away because of his blocked shunt and having to basically start over. Once he's able to prove he can eat and hold his own. Step down unit is in our sights. 

This step is a prep for going home. He will get all his IV lines out AND We can be parents! Change diapers, feed him, bath him, swaddle and dress him. Once he proves himself there and we pass our own test of being able to deal with him over 24 hours. He can go home! Finally! And yes, you read that right. We have to show we can take care of our baby! Sounds crazy but I'm thrilled. I can freak out if he feels too warm and not feel bad about it bc I'm allowed haha! This is where we will learn alot about signs and symptoms to look for with Eli. This is a very important part of Eli's recovery. We have to get ahead of his sickness, whatever it may be. A cold, an Upset belly, a bad day! This time is critical. Getting him to the next surgery is our focus! We have to keep him healthy! 

But let's not get ahead, right! ONE STEP AT A TIME! 

Look at this face. I'm so in love. 

Rocky road.

No. Not the ice cream. The official title to our previous 3 weeks. We can't seem to catch any sort of break. No matter how many times we "yell" at Eli and tell him to behave, he bites back with some sort of blip. He takes 5 steps forward, then BAM! 3 steps back! He's fighting through each and every one of them. I can't say that we don't have one strong 3 week old, obviously we do. Just look at this timeline. 

7/16 birthday! 

7/26 Norwood heart surgery 

7/28 closed chest

7/30 first feeding 

8/2 Clot/Shunt revision, re-open chest

8/6 closed chest 

8/7 cath lab procedure 

We have a very strong willed baby on our hands. Today he got aggravated with the RT team when they tried to suction out his lungs. The nurse said she got the meanest look. I will take responsibility for that :) 

They are keeping his lung function as a top priority. He's got an infection and its causing him some issues. Once this clears, they can start prepping him for extubation. He's gotta be able to breathe on his own with no vent! This is a huge step to his recovery. 

My biggest struggle lately has been seeing the calendar days get crossed off. I go back to work in 3 1/2 weeks. (sept 3) I cry everytime I think about it. There is a very high chance Eli won't be home before then. This, for me, is tough. I had a hard time going back to work with Lucas and I was off for 10 weeks with him. This time, I was only able to take 6 weeks off. I had so many doctors appointments that all of my PAID TIME OFF kept getting used up. So what I had left was all I was able to use to be home with Eli. Well, in this case, at Children's Hospital. Not the ideal "maternity leave." I hate it. I pray everyday something falls into place and I can be able to take off a little bit more time to be home with Eli when he gets discharged. I pray! 

Lucas has been staying with us at Ronald McDonald. He has done so well adjusting. His bedtime routine is very messed up but we expected that. 3 weeks with grandma then here and back to grandma and back here. That's tough on anyone! Hopefully soon he will catch back up and be my 9:00 sleeper again :) 

Here's a few pics of our last few days. 

Xoxo 

Holistic Health

Today I experienced one of the most spiritual events in my 27 years of life. 

A kind woman walks into Eli's pod. We're so used to women and men, in and out that reading a badge attached to their scrubs has just kind of gotten to be normal. Today this wasn't a doctor, nurse or anesthesia tech. She was from Hollistic  Health. What is that? My thoughts exactly. Then the next 10 minutes explained itself.

She began to pray over Eli. I got chills from her hand motions and couldn't quite make out her words. But I was in awe over what this woman was doing. It was by far the most spiritual thing I have ever been close to. She was very kind. She didn't ask me to partake in any of it. She just did her thing and exited the pod.

By far the one of the most memorable events in this journey. I'm still choked up. 

Pray.

7:00am. Buzzing across the room. Danny's phone was vibrating on the floor. Mine was buzzing from the alerts. 4 missed calls. I panicked. "Danny answer your phone!" While he managed to answer on the last ring, I had a voicemail. "We need you at bedside, your son has taken a turn" was all I heard from it. I rushed over and Danny was able to get some info from the docs on the phone. I met with one of the attendings. Here's what we know. 

At 5:30am Eli had an X-ray taken. His stats got very low. Never exceeded 40%. They couldn't hear the shunt murmer. Positive note, he hasn't had to be revived for any reason. There's plenty of blood flow but not enough oxygen. They are sending him to cath lab to see if the shunt is blocked. He is on the heart/lung machine again. They will be taking blood out to oxygenate it and placing it back in. The dye test in the cath lab will tell us if his shunt is blocked. If so they have some options. Balloon catheter, put in a stent or revise the shunt. This is opening Eli chest again and starting over. If its not blocked the they will plan for other options that we don't know yet. 

Concerns for Eli at this point: organ issues, kidney and liver and brain damage, brain bleeds. 

We don't know the status of his brain function right now. They will asses that once they get a plan going for his heart. 

Pray for Eli. 

Ronald McDonald House

We've been waiting to get into RMH since Eli was transported over to Children's. The call finally came Tuesday night. We got a room! Many families travel 1000s of miles to be at this hospital for the care of their child or children. They rely on this housing during their stay. To be local and still get this privilege is so awesome. We will be able to stay here during Eli's recovery and have Lucas here too. Once Eli goes to the step down unit Lucas can visit as much as he wants. Right now he's restricted to 15m a day and child life has to accompany us. Last night was our first night in RMH. Lucas was fantastic. Took him a little time to fall asleep but once the tv was off and he was able to go over all my face parts, he was out. At one point I think his finger was in my nose. I couldn't have cared less. He was with me. I miss him so much when he's away. I don't think I get enough kisses in before the next time he leaves. Hopefully he gets to be with us more now that we're in RMH. We have yet to figure out a schedule but we will. I'm excited :) here are a few pics of our wing. I have more to capture but this for now is all I got last night.